invisible illnesses – Chronic musician

The burden of proving you’re “Disabled enough”

Something I don’t think people who aren’t chronically ill/disabled understand is the constant burden of having to prove you are sick or disabled enough for the various types of help that you need to be able to exist in society.

Many people assume that if you are sick or disabled, you will get the help you need without too much fanfare, I have even heard people say that if you don’t get a particular type of help, that must mean you aren’t sick/disabled enough, as they assume that anyone who qualifies will get it automatically, but this simply isn’t the case.

There are so many types of help disabled people have to apply for, and for all of them the burden is on us to prove we are “disabled enough” to qualify, and if for any reason the people in charge of the scheme or benefit don’t agree with you, you just don’t get awarded.

Just recently I have experienced this. I won’t name the company, but I have been a holder of a document that helps you access facilities when you book or attend things such as gigs, festivals, amusement parks and more. It is well recognised and a lot of companies trust it, so a lot of places will as for it to prove you are eligible for the help you are asking for.

I have been using this document for six years. When you apply, you tell them what help you need, and they look at the application and your evidence, and decide if they agree. They then put symbols on the document to let venues etc know what help you require.

The first time I applied, I got all the symbols I asked for, without any issues. When the card needed renewing, I sent the same evidence again, as it was still in date, but this time they said they couldn’t issue one of the symbols, which was to show that I needed a carer. I contacted them and they told me their policies had changed, and that I needed a more specific letter proving I needed help while out that was more than a friend would normally provide.

I got a letter from my GP stating that I need help with injections, and that I need help safely getting out in emergencies, communicating and sometimes with other medicines and other miscellaneous tasks that enable me to go out safely. The company agreed that this was a higher need than they would expect a friend to manage, and gave me the carer symbol.

This month, it needed renewing again. I sent off the documents, including the letter stating I need significant help while out, including needing someone to inject me if I am unable to do it. I also added newer documents from my neurologist that showed my diagnoses, and a copy of my oxygen prescription. Again they came back and said they could not issue the carer symbol. I have emailed back and I am waiting for a response.

Keep in mind the evidence I gave is the evidence they specifically asked me for. There is a charge for the document, and, if I was to go back to my GP and get another statement of fact letter then I would be charged for that too. That isn’t something I can afford every time the document needs to be renewed.

Without the carer symbol, I have to pay for someone to come with me to anything I do, I no longer go out alone unless there is no choice (i.e when I go to hospital via ambulance transport). I cannot go to a gig, or the cinema, or a museum, or a normal doctors appointment by myself any more. The last time I tried it ended in extreme pain and being unable to cope. This places yet another financial and emotional burden on me. If I can’t afford to pay for someone to come with me, then I can’t afford to go at all.

I totally understand that things like this document, and benefits and blue badges etc need to be protected. If they are given to anyone who asks for one, they will loose credibility, but, as a disabled person, it is very hard to keep proving yourself, especially if the goal posts keep being moved. Each time I have applied to renew this document they have changed the requirements for evidence, making it impossible to keep up with and forcing me to pay for more documents I will probably only use once.

This isn’t an isolated incident, so many companies and government schemes do this. They say it’s to make sure the right people get help, and I am sure thats part of it, but the reality is that people who need the help are also being shut out. I cannot afford to keep paying for more evidence, so I am shut out of so many things that are supposed to help me.

Then there’s the emotional toll of constantly feeling like you aren’t “disabled enough” every time you get turned down. It makes you feel like you don’t deserve the support, like there’s some sort of competition and you lost, and this is a constant part of the lives of disabled people.

Another thing people don’t realise is that this doesn’t just happen to people with temporary illnesses or disabilities. I have multiple permanent illnesses and even though I have provided evidence of this I am still expected to show new evidence whenever these companies decide. Again, I understand the need to make sure systems aren’t being taken advantage of, and there are some illnesses that get better, or where treatment will minimise symptoms and function can be improved, but if you have been told by your doctors that this is not possible for you, then this should be taken into account when applying for support.

There are many disabled people in financial or social hardship because they were turned down for help that they desperately need, and that needs to be addressed. We need a much better balance between safe guarding these facilities for those that need them, while also making sure that it doesn’t become inaccessible for those who truly need it. The stress and emotional turmoil of these systems has caused me to seriously question applying for many of them and I know I am not alone in this.

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.

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.