invisible disabilities – Chronic musician

Why sentences that start with “at least” are generally unhelpful

We’ve all been there, someone is having a difficult time or they tell you about something hard in their lives and you really want to comfort them. It can be hard to know what to say when someone is going through a hard time, but sentences that start with “at least” are often the opposite of comforting apart from in a few very specific contexts.

As someone who has been dealing with chronic illnesses and pain for a long time and someone who has been very open with my journey since adulthood, I have heard a lot of “at least”. They have included

At least its not “insert illness perceived to be worse”
At least you have a partner
At least you have money (I don’t but that’s not the point)
At least you get to stay home all the time
At least you don’t have to work
At least you are young
At least you can do X activity

A lot of the time people mean well when they say these things, but sometimes people genuinely think you’re lucky because you don’t “have” to work and they do, or they think that your condition isn’t as bad as theirs, or that there are other conditions worse than what you have.

I am going to try to debunk some of these and explain why even if they were true, they still wouldn’t be helpful

At least its not “insert illness perceived to be worse”

There are a few reasons this isn’t a great thing to say, for a start its really dismissive, illness, pain and suffering are all relative, someone could be having the worst pain of their lives, it doesn’t matter if you think you have been through worse, if its the hardest thing they have been through, then its the hardest thing for them and that is valid. Even if they have been through worse in the past, they are allowed to find “easier” things just as tough to deal with.

Secondly, illnesses and suffering isn’t a competition, everyone is allowed to struggle , everyone has their own battles and they are entitled to support, no matter what other people are dealing with.

Thirdly, diagnosis alone does not dictate how much pain someone is in or how sick they are, or what other circumstances they have in their lives that could make things difficult. There are people out there with diagnoses that are perceived to be “worse” than mine who are actually much healthier overall and have a better quality of life. I also know of people who have diagnoses which are perceived to be less serious than mine who happen to be much sicker than me. The point is, the name of the illness alone does not tell us how sick someone is. Regardless, diagnosis does not dictate how much someone is going to suffer, it doesn’t tell people how much pain you are in, how much you can eat, how much medication you need to function, how difficult things are in their home lives, how difficult accessing care is or anything else that could impact their situation.

At least you have a partner

This is something I get a lot, usually from healthy people who just happen to be single. Don’t get me wrong, I absolutely love my fiance and I am very blessed to have someone in my life who loves me and who actually means the vows “In sickness and in health”.

However, the people who say this to me know nothing about my relationship or if its healthy or not, they just think I am lucky to be in a relationship and some of them even behave as if being in a relationship somehow makes being sick OK or not as life changing.

I am very, very blessed that I have someone who is supportive, kind and compassionate, but, maintaining a relationship when you’re really sick isn’t easy. Relationships in general need a lot of patience, understanding and hard work from both sides. When one of you is severely unwell, you both have to work even harder to keep communication open, to not get ratty with each other when you’re both running on no sleep. It is hard for me sometimes not to get short tempered when my pain is through the roof and I have not slept more than an hour or two for weeks at a time. It’s also very hard for my partner, he has to always be in reach of his phone incase I have an emergency, he keeps a medication list on his phone incase I ever end up in hospital unconscious and he needs to communicate it to doctors, and there are things other couples do every day that we are just unable to do together because of my limitations. The likelihood is that my health will get worse as i get older, and I am already well on my way to getting osteoporosis. He will watch me getting sicker the older we get, loosing more and more function and independence and that is going to be incredibly difficult for him.

To be brutally honest I also find some things more difficult, as when i am thinking about my illnesses I also have to think about him, and our future as a couple, rather than just about my illnesses/me. I have no problem with this at all, I adore my fiance and I would walk through fire pits to be with him. The compromises and thought needed to maintain the relationship are absolutely worth it and I will never begrudge that. I just think it’s something people underestimate, being in a relationship is amazing most of the time, but it is a lot of hard work.

At least you have money

This comment usually comes from people who live in less advantaged countries, who see that I am from the UK and automatically assume that I have lots of money and that this can fix everything.

There are two major things here – firstly I actually have no money, without my mother I would be homeless, I have no income and no way of getting one. Government help for people who are disabled and/or chronically unwell is very hard to access, and it’s very little money. I have access to one benefit, and it’s barely enough to buy the extra things that come with my conditions – gluten free food, skin care for my eczema, a comfortable pair of crutches, splints and other things that generally make my life more comfortable.

Secondly, even people who do have money can’t buy health, you might be able to buy a nicer wheelchair or a more accessible home, you might be able to pay for carers or a big car and a driver that can take you anywhere, but you can’t buy a cure that doesn’t exist yet, you can’t buy pain relief that takes away all pain, you can’t cure your paralysis with money or make things magically accessible in the outside world. Having money may make some things easier, like making sure you get enough food, making sure you have heating and food, but it doesn’t actually make being sick better or easier, and its not ok to tell someone with a serious illness that they should just be glad they have more money than you.

At least you get to stay home all the time / at least you don’t have to work

i have tied these together because they often go hand in hand. People who work/go to school/go out a lot often dream of being bale to just sit around doing nothing. This is because when you have a busy life and are always on the go, having a few days of just doing what you want, spending the day on the sofa or watching movies or whatever it may be, and people think that if you don’t work because of illnesses it’s the same thing. Unfortunately it really isn’t. When you have time off from school or work and you’re feeling well, you can do anything you want provided it is in your budget, you can have fun, you can see your friends and family, and if you have a day in bed or on the sofa its because you choose to. When you are chronically ill and sick enough to be unable to work, it also means you are often unable to do most of the things other people take for granted, people who are chronically unwell often get tired much easier, we are often in pain, some of us find eating and drinking harder and the majority have lots of health related admin and tasks to do. I personally have to make frequent phone calls to medical and admin staff, monitor and administer multiple different types of medications including injections, maintain my hydration the best I can and try to eat enough to keep my weight at a safe amount.

Then there’s the issue of finance, because I can’t work I have very little money, the money I do have goes on essentials that are mainly health related, and I can’t afford to do lots of fun activities. I also don’t have access to a car, and no one who is close enough to me to care has a car big enough for my wheelchair, so I am restricted to activities that I can get to by bus. The buses here only go to 2 locations and are every hour, so they are really inaccessible to someone with difficulty standing or walking for long periods as if you miss one you have an hour wait for the next. I am also at very high risk for infections due to the medications that keep me alive, so that makes it really dangerous for me to do certain activities. For the past 4 years my home has been the only safe place for me, but at times it has been more of a prison as I am quite literally trapped here.

At least you are young

I have to be honest, I don’t really know what people are getting at with this one, I can only think that they mean I am young and have the rest of my life to live? But in reality, being young does not make my situation any easier. I got sick at a really young age, I have been unable to have any sort of career, my social life is non existent, my friends have all disappeared and stopped caring, and I have no memory of a life without pain. I literally don’t know what it is like not to be in pain. i also know that even if my underlying conditions were all eventually cured, irreversible damage has been done to my body, I will never be totally well, and that’s hard to deal with when you’re only in your 20s and 30s. It also means that people tend not to believe me when I try to tell them what I have been through, people think i am too young to be as sick as I am or to have experienced everything that I have, even doctors don’t always take me seriously and many think that I don’t understand what’s happening in my own body.

At least you can do X activity

This is another one, people think that because I can do certain activities that I am fine. For example, I play the flute, I love it, its one of my favourite things, so people think that means my illnesses don’t bother me, or that I shouldn’t be upset about the things I can’t do.

I don’t like to focus on it, but the hard truth is that the list of things I can’t do is a lot, lot longer than the list of things that I can do, and the list of things I can’t do is getting longer all the time. Even the things I can do are dependent on how i feel that day, that hour, that minute, some days I can’t do anything other than curl up on the sofa and try to stay hydrated. There is also an element of just stubbornness a lot of the time, sometimes I have to prioritise my mental well being and I push myself physically to something that will make me happy. This doesn’t mean I am not struggling or not in pain and it’s a really fine balance between the two things.

These are just a few of the examples that I hear on a regular basis, there are many more ways that this kind of comment can be made, and while often well meaning, many of them can feel dismissive and as though the person making them doesn’t really understand.

Next time you are talking to someone who is expressing how they feel or talking about something they are going through, listen and be compassionate, and think very carefully before starting a sentence with “At least”.

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.

Coping with needing a mobility aid as a young woman

When I first started dealing with chronic illnesses, there were no outer signs of anything being different about me. Most of my pain was in my upper joints and abdomen and apart from the occasional wrist brace, there was no sign of the war happening under my skin.

As my illnesses started to progress and my mobility deteriorated I began finding it difficult performing day to day tasks without help. To start with, I used a folding walking stick which could be put away in a bag when I didn’t need it. Making the decision to use a walking stick was difficult. I was still in my 20s, and thought walking sticks were for older people. I left it until I physically couldn’t manage any more and then gave in and bought the nicest looking one I could. It was bright blue with silver stripes and for a while it actually helped. It made me feel more stable and despite the stares from strangers the colours made it feel more like a fun accessory. After a while it became evident that it wasn’t a practical choice though, the handle was far too hard and was causing me pain in my hands and wrists. I gave in and bought a more practical stick, a red one with a soft gel handle, but it was still foldable. The folding nature meant I could decide to “hide” the stick if I wanted to, I could put it away and pretend I didn’t need it while I was sat on the bus or in a cafe, I didn’t have to deal with the stares or the questions, I appeared to be like everyone else, and for a while I needed that.

For me, starting to use mobility aids made my disabilities feel more real. It felt like I was admitting I was broken, telling the world I needed help in a way I had never done before. Being able to choose when to show my sticks gave me the impression of control, and I clung to it.

It wasn’t long though before my mobility deteriorated further and it became clear that walking sticks were no longer enough. I needed something I could put my full weight through, something that would take the pressure off both legs. It was time for crutches. My first pair were standard NHS crutches, silver with hard handles. I told myself they were temporary and for a while I only had to use them intermittently. I actually found I didn’t mind the crutches as much, people just assumed I had an injury, they didn’t stare or point, and they didn’t make unkind comments. When my mobility continued to decline and my crutches became more of an every day need I invested in a pair of blue crutches with soft handles, making them much easier and more comfortable to use for long periods of time.

The one thing I found difficult with crutches was that I couldn’t hide them, I couldn’t just put them in my bag “in case I need them later”, I had to use them the entire time I was out and at times I felt like a fraud. Even though I was in constant pain, and even though I almost fell a few times because my leg couldn’t take my weight, I didn’t feel “disabled enough” to use walking aids full time. I felt like I was being weak or over exaggerating. The truth was I just hadn’t come to terms with my level of need yet, I was still stuck in the “its not that bad” phase. I’ve always expected too much of myself, I always expected myself to cope with the pain without help. I realise now that I was being unfair to myself and to my body and that I probably should have started using mobility aids much sooner. Once I got comfortable using them, my crutches opened the world up to me, I could walk further, keep mobile on high pain days, protect myself from falls and maintain my independence. When I first started using mobility aids, I worried that it would make me appear vulnerable and that would lead to people taking advantage, but instead making my disability visible meant that other people became more aware of my needs, people didn’t judge me for using the front seats on the bus, people gave up spaces for me in cafes and trains, people held doors open and helped with bags. I got to see the best side of humanity, and it made me feel hope for the world.

Eventually , about a year or two before the pandemic, I began using wheelchairs on longer days out or on bad days. I usually borrowed them from the customer service office where ever I was, but when the pandemic happened most places stopped offering this service. I realised how much I had been relying on this service and after a few months of internal debate, I finally took the leap and got my own wheelchair. It’s nothing fancy and I will probably need to upgrade to an electric one in the future, but its made the world accessible when I would otherwise be trapped inside. I mainly use it for days out as walking more than a short distance is painful even with crutches, but I have also used it for medical appointments on really bad days. Without the wheelchair I would have had to cancel those appointments as I physically wouldn’t of been able to walk. I have had amazing experiences with my family that were only possible because of the wheelchair. I was apprehensive about getting it, I didn’t know if I was disabled enough, I didn’t know if people would judge me, I didn’t know if it would even be used, but now I view it as freedom. I didn’t want to admit how badly I needed it, I didn’t want to admit how bad my health was getting, but it opens a whole world that would other wise be impossible to get to. It keeps me safe, it gives me peace of mind, and I am so grateful that I made that leap.