I’ve recently noticed that some people who suffer from chronic illnesses are starting to speak out more. This is wonderful because it is starting to make them feel that they have a voice. It is helping them to express themselves and explain the physical and emotional struggles that they go through on a daily basis. It is also finally putting the important message out there that treating them differently to others and dismissing them as lesser human beings is not acceptable. I’ve read so many of these types of articles now mainly because the majority of the support that I receive comes from online sources, particularly support groups for those suffering from adhesions and other chronic conditions. Before I discovered these I was pretty much alone with all of this. Finding those groups online and discovering that there are actually other people going through the same things day after day has made a huge difference to me. When I’ve been in hospital without any visitors and needed people to talk to or been away from home and struggling with pain levels – the support has been pretty instant and so valuable. However, I sometimes forget that healthy people do not have to think about or suffer pain all of the time or spend time online looking at such websites and I struggle to know what to say to them. Quite unfortunate really when they don’t know what best to say to me either. Issues with communication occur which are frustrating for both parties and sometimes people make comments that they believe are acceptable but are actually very upsetting for someone with a chronic condition.
There are many other accounts of this online which can be found easily. Search what not to say to someone with a chronic/invisible illness and you will find them. I’ve decided to write my own list which will of course end up being very similar to the others. There are things that I have missed out. In fact I can think of many more but I have chosen only 10. Some of these may sound a bit harsh. I’m not trying to be cruel. Other people really do mean well and you do have to laugh at these things sometimes. It stops you from going insane!
1. ‘You Don’t Look Sick.’
Already been covered in the Invisible Illnesses section. Not everyone ‘looks like’ what is happening to them or is going on in their body. I don’t ‘look like’ my body is being compromised by adhesions any more than another person may ‘look like’ they are going through a divorce or experiencing a migraine. Not all situations and illnesses show on the outside but they affect how your body feels.
2. ‘Get Well Soon.’
Arrrgh! This one infuriates me! Get well soon is what you say to somebody when they are suffering from the flu or a broken leg or some other situation that they are likely to make a full recovery from after a period of rest. It is not what you say to someone with a chronic or incurable illness because the word ‘get’ suggests they should be doing something to actually achieve this and with some illnesses people CAN’T get well. No matter how much they sleep, rest etc, it’s not ever going to be possible. I once received a ‘Get Well Soon’ card from a colleague some years ago while I was in hospital and while I understood they had sent it to cheer me up and to let me know they were thinking of me (Thinking Of You may have been a better choice) it upset me. It was a reminder that they didn’t understand chronic illness. It took some time for me to be able to discuss it with them but eventually I did and they understood. It’s just worth taking into consideration what is actually wrong with someone (ask if you’re not sure) before coming out with that one!
3. ‘It must be so lovely laying in bed all day.’
Really?! I’m surprised that people still say this to me but they do! Laying in bed, for someone with a chronic illness is not a luxury like laying in bed for an extra hour with a cuppa and the telly on at the weekend might be for a healthy person. It is a necessity. It is something they have no choice but to do when their body can no longer function well enough to do anything else. Even laying in bed requires an amount of energy. Never wish that you have the kind of day that someone with a chronic illness may have. You may be able to lay in bed but you will also have to deal with the pain, the depression, the isolation, the frustration and so many more things that they will experience every day. I find that healthy people who are unhappy with their current lifestyles always say this to me. I find this quite bizarre. It’s worth remembering that if for example your job is making you depressed or tired you can do something about it. You can make a positive change. If you develop a chronic illness you cannot change it.
4. ‘Have you tried……?’
Believe me anyone suffering from a long term illness will have done and tried everything possible to become well, so if those things have not worked there is a good reason for it. Of course, I still do what I can to maintain good function of the parts of my body that haven’t gone wrong and stop some of the issues that I have from becoming worse, for example, I see a dietitian to help me with my liquid diet and I visit my chiropractor regularly, but telling me that I should take gothic fairy pills or unicorn dust or some other ridiculous thing I’ve never heard of before bed and it might cure my adhesions is not really very helpful! For pain management and advice on alternative treatments I consult my pain management doctor.
5. ‘I’ve got a friend who’s got what you’ve got. I’ll ask them about it.’
This makes me laugh. Always said with the best of intentions but unhelpful. What are you going to ask them? Whether it actually exists? Ask me instead as I’m going through it right now and would be happy to tell you anything you’d like to know about it. Some people don’t know what I’ve actually got when they say this. I know everything there is to know about it already because I cannot escape it.
6. ‘You should get out more.’
This one however, upsets me a lot. Most people before they developed a chronic illness had a different life to the one they have now. Being unwell every day limits your activities so that you cannot do all of the things that you want to, that most people take for granted they can do and do without thinking every day. It just makes people feel even more guilty for having an illness in the first place and that’s not helpful. If they could be out doing it they would be.
7. ‘You need to exercise more.’
This is a tough one for me. Before I developed ARD I exercised a lot. Even while I was still at school I would be exercising several evenings a week and again at the weekends. I joined the gym and visited it most days of the week as well as participating in sport. Exercise was one of the most important things in my life because it simply allowed me to be me. Not to mention the huge benefits I gained from doing it. In the year before my illness arrived I was going to the gym six days a week, sometimes twice a day and was considering teaching my own classes. Only now that I’m unable to participate in those activities do I realise just how fit I had been for the 20 years before I developed adhesions. I took for granted that my body was physically able to perform in that way which I now very much regret. Of course I try to move as much as possible on the days I’m out doing things but working out in the gym stretches my adhesions causing pain beyond comprehension in the days that follow. If I could be in that gym right now I would be. Nothing would make me happier right now.
8. ‘All those medications are not good for you.’
Often said by people who have little or no experience of chronic conditions or taking medication. No they’re not at all good for me. I completely agree. They present the most appalling side effects which are almost as debilitating on some days as the illness itself. Migraines, sinus pain, inability to concentrate or remember things and blurred vision to name just a few. Nothing in this world would give me greater pleasure than to come off them all, throw them in the bin or burn them and never see them ever again but I can’t because they are medically necessary and I cannot get by without them. Few people actually want to take medication but when symptoms cannot be managed any other way there is no other choice.
9. ‘You’re Too Young To Be Sick.’
Well to be fair, in some ways I agree. I don’t think that I should be in bed in pain most days at the age of 38. I would like to be going to work every day and enjoying my studies and so many other things and I’d like to not think about illness until I’m really REALLY old. Unfortunately illness doesn’t discriminate. It doesn’t care how old you are or what job you do or where you live. It doesn’t care about your ambitions or your interests or whether you’d made plans for your future. Anyone can become ill at any age.
10. ‘At Least It’s Not Cancer.’
This is the big one. The difficult one. One I cannot even mention on here without fear of unintentionally offending people or having to fully explain why it’s on the list. I am NOT questioning the seriousness of Cancer or the devastating affect it has on so many lives and it is very important that I make that clear. Unfortunately some people cannot understand illnesses that they have not heard of before and believe they cannot be serious if they are not being talked about everywhere. When people say this it is dismissive to the person suffering another serious illness. In the last two years three friends of mine have died very very painfully due to complications caused by adhesions and many more people will in future. I am now stuck not knowing if I will too. The problem is that nobody is looking for a universal cure. My point is that there are also other illnesses that can’t be cured, that people can die from and awareness of these illnesses has to be raised somehow however it can be done.