Tag Archives: chronic-illness

Alternatives to “Get well soon ” for people with chronic illnesses and disabilities

When we hear that someone is unwell, our first instinct is to wish them well, and hope that they recover quickly. This means a common response to someone saying they aren’t feeling too good is “get well soon” or ” I wish you a speedy recovery”. For most common ailments like the flu or a “normal” headache, this is a totally appropriate and often appreciated response.

This changes when the illness is chronic, and especially when the illness is known to be permanent and incurable. When you know that your illness will not get better, it can be jarring to hear “get well soon”, especially from people who you know well and have explained your situation to, but, its such an ingrained response, it can be very hard for people to know what else to say. Not responding or not wishing someone well can seem cold and uninterested, we want to show someone we care about them and want them to be OK, but sometimes the harsh reality is that they aren’t going to be ok for a very long time, and sometimes they won’t ever be truly OK again.

In this situation it is so tough to know what to say, so I would like to share my thoughts on what I would like people to say/ what I think would be helpful. As always, these are my thoughts and my thoughts alone, and do not apply to everyone, I speak for myself and myself only, not the whole chronic illness community, so be open to hearing other suggestions and/or opinions from the people in your life.

Suggestion one – I am sorry you are going through this, if you ever need to talk about what it’s like for you to deal with this, I will listen.

This lets someone know that you are aware that what they are going through is hard, and offers them a safe space. Very often people with chronic illnesses have to mask and pretend to be ok when really they aren’t, offering someone the chance to have an open conversation about what they are going through, with no masking and no worrying about being judged can be a huge gift. Only offer this if you can follow through, and remember that this is an opportunity they probably don’t get very often, so make sure it remains a safe space.

Suggestion two – I know that I cannot take away your illnesses, but is there anything I can do to make your burden lighter?

This shows you are aware that you cannot fix the person or their situation, but that you are willing to try and make it easier to bare. Asking what you can do allows the person to pick the thing they feel they need the most or are most comfortable allowing someone else to deal with. This could be something as simple as cooking them a meal, putting the hoover around for them, picking up a medicine from the pharmacy or picking up a child from nursery or school. Sometimes when your mind is overwhelmed with big things, the little things become a huge burden, and if someone can ease that burden it makes things feel so much more manageable.

Suggestion three – if they are cancelling an activity because they are too sick or there is a risk of the activity making them sicker, ask about an alternative rather than just not inviting them next time.

This is something I really appreciate when people do for me. Its one thing to miss an event because you have the flu, where you know you will get better and be able to join in next time, but when you are unable to join in because of chronic illnesses, you are very aware that you might not be able to join in for weeks, months or years at a time. There might be some activities you will never actually be able to do. I have had so many people give up on me, including people I thought understood, because I kept having to say no to specific activities, but everyone else wanted to keep doing them. Eventually they just stopped asking me, or making any attempt to make things accessible to me. People often think that if they can’t see why something is inaccessible, or why I am too sick to do something, then I am just making excuses. I often get told “get well soon and maybe next time you can join in”. I would absolutely adore it if sometimes they said “I’m sorry you’re feeling so sick, what if we come over and have a PJ day and watch movies all day” or ” I know eating is challenging for you, what if we did something crafty instead”. There are many ways hang outs can be made more accessible for your sick loved ones, it takes a little creativity sometimes, but it can be done. I am not suggesting that every hang out needs to be tailored to that person, but even one in every 3 or 4 hang outs being something they can join in with is so much more welcoming. Sometimes they may feel so sick that they cannot think of anything they feel up to doing, but thats ok, the fact you ask them will mean a great deal to them.

Suggestion 4 – I know this is really hard for you, and I know I can’t make it all better, but I have your back and you’re not alone

This is so powerful. Just knowing that someone has your back, that they understand things are hard and it’s not going to scare them away or make them think differently of you is so, so powerful.

Suggestion 5 – Do you need support to access medical help?

While there isn’t always something a doctor can do for chronic illnesses, if someone is having an acute flare of their condition and seems like they may be struggling beyond what is considered “normal” for that person, asking them if they need support to access medical care can be really helpful, provided you are respectful of the answer. I have had times where if I had access to better transport, I would book a GP appointment to get checked out , but because I am stuck with buses, I will wait things out and hope it doesn’t escalate far more often than I should. For me, going to the doctors and especially going to a hospital is something I do when I have no other choice, and the alternative is going to A&E because its heading towards and emergency. If someone was willing to help me get to the doctors, I would book more regular appointments to get check ups and discuss anything concerning me before it became an urgent issue. On the other hand, some people will ask me about going to the doctors when I am just experiencing normal aspects of my conditions and there is nothing a doctor will be able to do that I can’t do myself. I never mind being asked, but some people get really pushy, and this can be distressing.

Suggestion 6 – Is there anything I can get you to ease your symptoms?

This one I personally like. People are often quite quick to say to me “sorry there’s nothing I can do for you”, but they often haven’t actually asked me or thought about the types of things that they usually see me do when I am in pain. Some people though are very good at it, for example, I use a heat pad almost all the time to ease my pain, so , if I am in pain and I don’t have my heat pad, my fiancé will go get it or ask if I want it. My mother will ask me if I want my heat pad or a hot water bottle. This is a small thing, but it really helps. Unless you know someone very well or know what they need for specific symptoms its hard to anticipate needs like this, but what you can do is ask them if there is anything you can get to ease symptoms. These may include getting a heat pad, ice packs, pain medications, ginger tea for nausea, a blanket, a glass of water or something to eat, or a comfort item like a favourite teddy or comfy hoodie. These small things make people feel seen, and show that you are actively trying to ease their discomfort and care for them.

The biggest thing I would say with any of these is be consistent. Too many people with chronic illnesses feel like they are forgotten about after the first few months of illness. When you first get sick, you are often surrounded by people who want to help. There are visits and calls, gifts and meals, accommodations are made and everyone checks in to see how you are and what you need. After a while though, people go back to their lives, assuming that you are either better or “used” to the condition by now. The offers of help get further apart, people stop checking in, and instead of making accommodations people tell you to stop being lazy and to stop making everything about you. People actually get frustrated and even annoyed that you aren’t suddenly all better. So, the biggest gift people can give me is continuing to check in months and years after diagnosis, continue to offer help, to hang out, to show genuine interest in my well being and not make me feel like a burden or an inconvenience.

How to ask about someone’s chronic illnesses/disabilities

Humans are naturally curious beings so when we come across something we aren’t familiar with its only natural we want to ask questions and learn more. The problem however is that sometimes when dealing with sensitive topics questions can come across as nosey, insensitive or even down right rude.

As someone with a long history of chronic illness I have experienced many years of questions and curiosities. For the most part people mean no harm, but when you’re dealing with this on a regular basis it can become overwhelming. In this post I’m hoping to help navigate asking questions about chronic illnesses and disabilities and what not to ask. Pease remember I am speaking from my own personal experiences and preferences so always remember other people with chronic illnesses/disabilities may have different opinions.

* Always check its ok to ask about someone’s condition first.

I always prefer it when someone asks me if its ok for them to ask a question/questions before they begin asking. If someone just blurts out a question it can feel insensitive and puts me on the spot whereas if they ask permission first it gives me the option to say no, or to put boundaries in place for my own comfort.

* Ask the person if there are any subjects that are off limits

As we are all individuals, we will all have different levels of comfort when answering questions about our illnesses or disabilities. These comfort levels may even change day to day so it’s always really helpful if someone asks what my boundaries are and respects them.

* Don’t ask a question if you’re not prepared to deal with the answer.

I have lost count of the amount of times someone has asked me a question about my situation and then been totally unable to deal with the answer. This leaves me feeling misunderstood and alone. If you can’t deal with the worst case scenario answer then just keep the question to yourself.

* Don’t ask about prognosis without express permission.

Prognosis can be a really difficult topic. While its natural to want to know what someone’s future may look like, its a very difficult subject to talk about and there’s a chance the person doesn’t even have a full answer. If you absolutely must ask, always give a warning shot and wait for permission. Do not approach a stranger with this question.

* Don’t respond with unsolicited advice

Due to the fact I am so open about my conditions I often get people asking me more information about my illnesses including treatments and symptoms. The questions themselves don’t usually bother me, but people often can’t resist giving me unsolicited advice when I answer. This actually puts me off answering questions in the first place and can feel as though people think I’m not taking care of myself.

* Respect boundaries no matter when they are introduced

Boundaries are super important when dealing with sensitive topics. I often find that if I answer one question people think I will answer all questions even if they’re really personal or if its the middle of the night. People often get offended if I say no to answering more questions, especially if they have seen me talk about my illness on a social media profile. The person with the illness gets to decide how much they say, when they say it and who they say it to. It is entirely their right to change their mind about sharing, or to only want to share at certain times.

* Don’t make it about you

Although hearing about someone’s illnesses or situation can be difficult its important that you don’t make the situation about you by instantly talking about how it makes you feel or becoming excessively upset. If you have an established relationship with the person and/or its someone you are close to then it may be appropriate to talk about how the situation impacts you when the sufferer is ready to do that or once they have finished talking about their own feelings. If its someone you don’t know or you’re only having a one off conversation then its better to attempt to control your response and maybe talk about your feelings with someone else who isn’t impacted by the situation.

*Only offer help if you can follow through

It’s natural to want to help someone who is suffering, but sometimes we make offers and promises we can’t keep which can lead to tricky situations. If you’re going to offer help, please make sure it’s something that you can stick to. If you can’t offer practical help then a listening ear is often just as valuable. If you can give practical help, it’s usually best to ask the person for examples of the type of help they may need or want, rather than making assumptions or doing things without checking first.

*Don’t suddenly change the subject

If you have asked someone about their illnesses or someone is telling you about their situation, do not just suddenly change the subject. I have lost count of the amount of times someone has abruptly changed the subject when I am trying to open up to them. When someone is trying to talk about a hard situation it can make them feel extremely vulnerable and when they are cut off or the subject is changed mid conversation it can make them feel dismissed, unimportant and as though you just aren’t interested in what they have to say.

10 Things I wish everyone knew about life with chronic illnesses

There are many aspects of chronic illnesses that you will only truly understand if you actually deal with one yourself . This can make it difficult for those of us dealing with these illnesses to integrate into society and maintain jobs, social lives, intimate relationships and more. Here are 10 things I wish everyone knew about living with chronic illnesses.

1 – There’s no time off.

When you have a chronic illness its a 24/7 365 day job. There’s no putting in holiday leave, no baby sitters or task sharing and there are no allowances for holidays or special events. We have to deal with our illnesses where-ever we are, no matter what we’re doing or who we are with. Even at night, when the world is sound asleep we are often up late taking meds, managing pain and other symptoms, trying to maintain hydration, adjusting positions and keeping our temperature just right. It’s exhausting and its lonely, no matter how good your support system is it is impossible to fully communicate how difficult it is to live with these things 24/7. Burn out is common among people with long histories of chronic illnesses and its really not surprising when you think about it, so give us a little grace if we’re a little cranky or we slip with our household duties, we’re working a full job just existing.

2 – Doctors don’t know everything

So many times over the years I have heard “why didn’t you go to the doctor” or “you should get a different doctor, you should be better by now” or words to that effect. Here’s a ground breaking fact – doctor’s don’t know everything! That’s right! Doctors are humans just like the rest of us and it is impossible for them to have answers for every problem and every ailment. There is a lot about the human body that we still don’t understand yet which is complicated by the fact that they can’t ethically examine the human body while people are alive if there’s a chance it will cause harm. As a result, there are a lot of things doctors can’t cure, they can’t always just write a prescription and make everything better. The best doctors I have had are the ones that acknowledge this, they know they don’t have all the answers and they don’t make promises that they know they cannot keep, instead they will talk to me about the options we do have and why they think each option is good or bad. They make sure that I understand why they can’t make everything better, and work with me to ensure the best quality of life possible while trying to figure out a long term plan.

3 – Sleep doesn’t fix fatigue

We’ve all been tired, whether we’ve pulled an all nighter getting college work done, stayed up late chatting to a new beau or lost sleep to a loud neighbourhood party we all know what sleep depravation feels like. We also know that usually the answer is a good nap followed by a few really good night’s sleep. Fatigue is different, fatigue is feeling like the simplest tasks are 100 times more difficult, something as simple as going upstairs becomes a mammoth task, walking for 5 minutes feels like walking a marathon. For many people with chronic illnesses fatigue is a well known friend, just existing with a chronic illness burns more energy than existing in a healthy body, simple tasks take extra effort and we often have the double whammy of disrupted sleep due to medication or symptoms. For us, a nap or a few good nights sleep won’t help, we could sleep for a week straight and still wake up feeling exhausted. What can help is pacing, breaking tasks up into smaller, more manageable chunks, only doing a certain amount in a day, taking regular breaks and staying on top of food and drink. If you want to help someone with fatigue, taking some tasks off their plate may be a good way to go, you could offer to cook them a meal, take the rubbish out, watch their kids or even offer a relaxing activity such as a movie night so they get a chance to hang out and rest while feeling included. What really helps is asking what the person needs and doing it without judgement.

4 – Unsolicited advice isn’t helpful

Whenever someone is sick and suffering it is totally natural to want to help them, to want to fix things for them and make their lives easier. Any good person hates to see the suffering of anyone else, especially people they care about and this drives them to give anything they can, including advice. Unfortunately this advice isn’t always wanted and in some cases can be distressing and even dangerous. If someone has been dealing with a chronic illness for any length of time there is a good chance that they have already tried every reasonable step to help with both the underlying illness and the symptoms. Dealing with these illnesses is exhausting and isolating, so imagine what it’s like when everyone you talk to has an opinion on what they’re doing and how they should be managing things. If you really, really want to give advice, ask the person if they would like to hear your thoughts first, for example if you’ve heard of something that might help nausea, you could say “I saw a new way of dealing with nausea the other day, would you like to hear about it?”. If they say no, then listen! Don’t continue to push your advice if they don’t want it. Just as importantly, if they say that something won’t work for them or that they already know what to do, then please just believe them. They aren’t saying it to be difficult and it’s not that they don’t trust you or don’t want to get better, they just know their body and their situation better than you do and have a good idea of what will and wont help.

5 – Rejecting an offer of help isn’t personal

It’s absolutely natural to want to help someone who is struggling but sometimes there isn’t anything you can do that will actually help the situation. There are many reasons why someone may say no to an offer of help, they may already know that there isn’t actually anything that will help in that moment, for example they may already have all the help that they need, or they may need help that is of a more personal nature than they feel comfortable asking you for. Over the years I have had people react very negatively if I have turned down an offer of help and people take it extremely personally, but it’s never ever intended that way. If you really want to help, asking the person what they really need is a good start, if there’s nothing they need, then you could ask if there’s anything they *want* to do that they wouldn’t normally ask for like a fun trip or yummy food that isn’t just the basics. If this still isn’t needed/wanted at that time, you can let them know that if anything comes up then you will be willing to help even if time has passed.

6 – Not all illnesses/disabilities are visible

This is something I really wish more people would understand. There are many disabilities and illnesses that are not visible on the outside. For many people with chronic illnesses it’s impossible to tell just how sick they are from their appearance. Many times I have had people tell my I don’t look sick or even that I “look better” while I was actually at my sickest. Even during months of endless hospital stays, being unable to eat without being sick, constant pain and exhaustion I had people tell me how well I look. I have been judged so many times for sitting in a disabled seat on the bus and not getting up for someone older than me because people just assumed I was being lazy, they couldn’t see my immune system destroying my intestine or my joints feeling like they were on fire. Always remember that it’s impossible to truly know what is happening under the surface and someone may be fighting a battle that you know nothing about.

7 – Using a mobility aid does not mean you can ask me private medical information

In the last 6-7 years I have gone from using no mobility aids, to using a folding walking stick, to using crutches, a wheelchair and most recently a rollator. I currently alternate between the later three depending on how bad my symptoms are and what I am going to be doing. For some reason people see these and think it is appropriate to ask me why I am using them. I understand curiosity, and in some contexts I don’t mind answering questions, but when I am minding my own business waiting for the bus, or trying to pay for something in a shop, I would rather not be stared at and quizzed about my medical conditions. I am just trying to get to my appointments or get my shopping like everyone else, and
I would like to do it without being made to feel like some sort of spectacle.

8 – Having fun doesn’t mean we’re better

When you have chronic illnesses and you’re always in pain or feeling rotten, you learn to have fun regardless. Of course there are days where you have no choice but to stay in bed or crash on the sofa, but if we waited to feel well before doing fun things we would waste our whole lives. People with chronic illnesses become very good at having a good time even when feeling horrendous, we learn to pace ourselves, we learn to plan for days for events to allow us to enjoy them, we learn to clear our diaries for days or weeks before and after so we can recover. We also learn to find joy in the smallest things and in moments that most find insignificant. We can make memories sat on the sofa laughing about silly things, or at a music gig , or even in a hospital waiting room. We don’t take any chance at joy for granted.

9 – One good day / week/ month doesn’t mean we’re better

Many chronic illnesses and disabilities fluctuate, it’s quite common for people with a chronic condition to experience periods of less symptoms accompanied by periods of worsening symptoms known as a flare up. For many, the occasional good day/week/month is refreshing and a nice break, but it doesn’t mean we’re all better. For one thing, a good day for us is often still what most would consider bad, we are often still in pain or fatigued etc, and we still have to be careful about what we do so that we don’t make things worse for ourselves when a flare up does start. For another, we know that the good day won’t last forever, we know that the symptoms will be coming back just like before, so even if we get lucky and get a good stretch of time before the other shoe drops, we know that it WILL drop eventually and we have to be constantly prepared.

10 – Pity parties are allowed

We don’t want you to feel sorry for us or pity us, but we also don’t want to feel like we have to be brave and strong all the time. Being constantly sick sucks, it’s hard always being in pain and knowing there isn’t a way to stop it, it’s challenging being reliant on medications, devices and even other people to be able to live. It’s exhausting being on a never ending ride of meds, hospital appointments, phone calls and self advocacy. We are allowed to throw ourselves the occasional pity party and it’s not OK to shame us for it or make us feel like we’re weak or like we should be handling things differently. The key to this is that it’s occasional, and that it’s driven by us and not others. If it starts to be a regular thing and your loved one can’t seem to find any joy in life, it’s a good idea to just offer them some extra support and love. If it’s just occasional and they can still find joy and things to be happy about, then let them be, join in if they would like that, and pity party all night.

So that’s my 10. This is all from my own point of view and experiences of course so other people may feel differently. There are many more things I could add to this list, but these are the ones that come to mind most freely. If you’ve read this far I hope it’s got you thinking a little about life with chronic illnesses. If it’s resonated with you consider sharing it with a friend and think about it the next time you interact with a chronically sick loved one.

How do you do it?

” How do you do it?” is one of the most common questions I get asked from people who have just found out about the extent of my illnesses.

The honest answer is, I don’t really know. Chronic illnesses are weird like that, for a lot of people they just creep up on you, you wake up sick one day and don’t get better. Some people stay the same or have a long period of stability, some people get progressively worse, some people relapse and remit over time.

In my personal experience, my chronic illnesses have built up over time, at first there was only joint pain, then the coeliac and with that came a distinct lack of energy, then came the crohn’s with its nausea and stomach cramps, then I was officially diagnosed with arthritis, then I had my jaw surgery. then came the cluster headaches. I dealt with things as they came along and for a long time i tried to keep living my life as normally as possible, I kept going to school and then college, managing my pain any way I could until it just became impossible to do those things. When I look back over the last 19 years I genuinely don’t know how I have got to this point. So many things have happened, hundreds of tests, hospital stays, procedures, IVs, surgeries and injections. I have failed multiple medications and treatment plans and I have had constant debilitating pain in one part of my body or another through all of it.

When you stop and think about everything you are dealing with things it can be really overwhelming and there have definitely been times when I have thought I would stop functioning, where I couldn’t see how I was going to keep going for even another day, and then a new day comes, and I get up and brush myself off and go on with life. While you’re in the midst of the pain it can be difficult to see how much you’re actually going through, it’s almost impossible to take in every emotion, every bit of physical pain just merges together in an endless slurry. Its only when you look back with hindsight you can really see how much you’ve been through and for me those are the moments where I struggle to see how I am going to keep going.

The problem with chronic illnesses of course is that they never stop, so even when you stop and look back you’re still not seeing the full picture because it isn’t over yet. I think its because of this that I struggle to verbalise how I “do it” or really take in exactly what I have been dealing with. What I will say is that a lot of people think they would never be able to cope with a life like mine but the truth is when you get sick you aren’t given a choice, you have to fight if you want to keep living and that fight won’t suddenly stop. Most people would be amazed at what they could cope with if they really had to do it.

Generally you try to make the most of the things you can control, you try to forge a life for yourself the best that you can, you attempt to maintain relationships and surround yourself with people who love and support you. There is no secret to getting through or dealing with chronic illnesses, no secret to dealing with daily severe pain or coming to terms with knowing you won’t get better, but I promise you in the majority of cases you will find a way through. Putting one foot in front of the other is a good place to start. It’s all I’ve done for the past 19 years and it has got me this far. The one good thing I can say about living with chronic illnesses is it has taught me to be grateful for every day and every opportunity, because I don’t know when my last chance to do something will be. My health has been deteriorating steadily for a long time and I have had a few “lasts” that I didn’t know were coming, like my last 8 mile walk, my last meal in a restaurant without worrying about getting sick, my last pain free day, and I will have more “lasts” throughout my life, and although thats incredibly hard, it has taught me to enjoy every last second that I can.

Please don’t tell me it could be worse

Everyone has different ways of dealing with difficult things that happen to them, some people find it easier to remind themselves of all the good things that have, some try to focus on all of the things they have, some try to focus on people who “have it worse” and some have to deal with it head on.

Like many people with chronic illnesses, I get a lot of comments and advice about how best to deal with things, usually from people who dont know me and my full story. They usually mean well , but can be inadvertently hurtful or insensitive with their advice.

After spending the last 19 years of my life in one form of pain or another I have had more than enough chance to work out what helps me and what doesn’t. I have a history of bottling things up because I dot want to be seen as complaining or because I thought I shouldn’t say anything because “it wasn’t that bad compared to others”. It has taken me a long time and a lot of hard work to get to a place where I can now be more open when I am struggling and I have even started an instagram account where I share some of the ups and downs of dealing with chronic pain and chronic illnesses. Having said that there are still details that I choose to keep private, I don’t share much about what has happened to me in the past and I keep most of my personal life like my relationship with family and friends off account .

The last few years have been particularly tough, the pandemic had a huge impact on my life and continues to do so even now, I have also suffered two very close bereavements and my health has continued to deteriorate. There has been a big emotional toll as I have tried to learn to live in a new normal, in a world where I could still catch Covid 19 and end up very seriously ill. There have been a few occasions where I have attempted to share just how tough I have been finding things and instead of empathy and understanding I have been met with people telling me just how much worse they think I could have it.

Now, I understand that for some people this is a helpful way to look at things, and it brings things into perspective but for me it feels very invalidating. Technically things could always be worse for almost everyone, even those in the most heart breaking situations could theoretically have it better than someone else. Suffering is not a competition, it is relative. If there are two people in A&E with broken legs and one of them has also broken an arm, it doesn’t mean the person with “only” broken legs is suffering any less.

I am the type of person who doesn’t like to burden others with my problems, I will often do everything possible to carry on going and not show how much I’m really struggling, especially emotionally. On rare occasions, and in rare spaces (like my instagram) that I feel safe enough to share even a fraction of how I really feel, I really do not need to be told that it could be worse. I have gone though a massive amount in my life, including harmful relationships but these last few years have been the hardest of my life and I rally don’t want to loose one of the only places I feel able to be honest about how I am feeling.

I don’t believe I need to be “healed”.. here’s why.

When you have been dealing with chronic illnesses for any length of time you inevitably come across people who think you need to be healed/cured/fixed in some way. This can come from all types of people, there are people who think that if you’re a good Muslim, Christian, Jew, Hindu etc then you will constantly be praying for healing. There are people who think that you can’t possibly be OK with being sick or disabled and think that you should be constantly seeking cures, trying everything no matter how extreme or how little benefit it will actually have. Whenever I am faced with this I give my honest response – I don’t believe I need to be healed, and I’m going to attempt to explain why in this post.

Before I get to the explanation I just want to say that if you’re someone that really wants to be healed, that needs to hold on to the hope of healing to cope or to get through, or someone that believes in trying every remedy possible to try and make things better then that’s absolutely ok. I’m not judging you and I respect you. All I am asking is that you give people like me the same respect and accept that we have accepted our situations.

One of the hardest things about dealing with a diagnosis of a chronic illness is learning to accept that you will be living with it for the rest of your life. It can take months or even years to stop hoping you’ll wake up one day and it will all have disappeared. It often takes a lot of processing and hard work to finally be ok with yourself as a disabled or chronically ill person. I have been in some form of pain since I was around 12 years old. I have a long list of diagnoses and each one adds another layer of things I have to learn to live with. Constantly being told by society that I need to be fixed or healed makes that acceptance so much harder as it can make it feel like you’re not good enough as you are, or that you should somehow be making more effort to get better, and you are failing if you don’t.

For me, accepting that my illnesses are permanent and that I am not going to suddenly get better has actually helped me to enjoy my life in the here and now instead of putting things off. If you’re constantly waiting to get better you can end up putting off experiences and relationships because you think you’ll have chance when you’re better and that those experiences will be more valuable as a healthy person. I can say with certainty that having chronic illnesses makes so many of my experiences so much richer. I have learnt to make the most of every moment that I get. My illnesses teach me everyday to make memories from the simplest moments and I think that as I go through life they will continue to teach me more, so while I don’t want to be in pain and of course its hard, I wouldn’t ever give up the perspective having chronic illnesses have given me.

In addition to all of this, I believe that having a diverse population with a verity of experiences, abilities, needs and perspectives is good for society. Change happens when people from all walks of life are being represented and heard, without disabled people we would loose a huge range of experiences and thought processes. There are many inventions that wouldn’t exist without disabled people. Typewriters we originally designed by an Italian inventor who noticed that his friend was unable to hand-write letters because of her blindness. In 1608, Pellegrino Turri developed the first ever type-writer with metal arms and raised characters which allowed his blind friend to write. The inventor also invented carbon paper as a way to provide ink for the type writer. Other inventions originally developed for disabled people include Electric Toothbrushes, kitchen tools such as OXO good grips, speech to text recognition apps, fidget spinners, dropped curbs, bendy straws and audio books. This list is no where near exhaustive but provides good examples of products inspired by disabilities that have become integral parts of many peoples lives. Without the difficulties that come with disabilities we wouldn’t be driven to find solutions which would likely result in a vast decrease in innovation.

I also believe that having a diverse range of experiences in society helps to increase empathy and feelings of community which is really important for those wishing to experience and spread Gods love. It also takes a huge amount of faith to continue believing in God and his love while experiencing chronic and incurable illnesses, this type of faith is unending and cannot be rocked, meaning that those with chronic illnesses are a very valuable example of what faith can really do.