While surfing the web I caught sight of this really wonderful letter that expresses much of what I feel and go through. So I wanted to pass this on.
My comments are in purple, clarifying how I feel personally about what is being said in this letter and how it pertains to me.
An Open Letter To Those Without Invisible Disability Or Chronic Illness
… by Ricky Buchanan
Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
I to try to be carefull in what I do. Somedays I am doing just fine, while others I have to struggle to get through my day. My mood can reflect that. I don’t mean to let it get in the way of things, but I am only human.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
Amen to that. I sometimes find it difficult to answer the “how are you doing?” question. The typical answer for most people would be “I am fine”. Me, there is no typical. I could be dealing with major pain all throughout my entire body or it could be minor discomfort from a dulled pain in my joints. The pain is almost always present, but I have dealt with it for so long that I’ve learned to endure the minor aches and pains and push through the major ones. So, if you ask me how I am doing, fine doesn’t really cover it. Fact is, I could very well be having a grad old-time and enjoying myself, and all the while the pain, fatigue, and discomfort are still right there beneath the surface. So on the one hand the part of me that if enjoying whatever it is I am doing, but on the other hand, if I stop and focus just on the pain, I am not doing well at all.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.
While I have had days like this, where I have to sit or lie down even every 15 to 20 minutes or so because whatever it was I was trying to accomplish has left me exhausted and fatigued, it isn’t a daily occurence. Days like that tend to happen when I have a lot going on and I push myself. It generally occurs around the holidays or in planning something big like a party or a trip. When I do have these days it is usually in private. I don’t like people to see that part of my illness. I guess I worry about being judged as lazy or weak, or incapable.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
All of these are true for me as well, especially the thinking and being social part. Fibro fog and focusing issues dull my senses and thinking straight isn’t always an option. If I am not answering the phone or accepting invitations to go out, it’s because I just can’t; it’s not personal
Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last-minute, if this happens please do not take it personally.
I have had my share of days like this as well where just getting to the bathroom is a feat in itself. Mostly I can manage to function just fine with minimal pain (but pain none the less) through out the day, but when evening hits that’s when you will see the difficulties the day brought with it. That’s when you will see me struggling just to get off the couch and shuffling across the room stooped over in pain to get the bathroom.
I used to ignore the need to cancel plans and I would go anyway, and usually end up paying for it for the next day or two. But lately I have found that the need to cancel happens more often now that I am getting older – I tend to listen to my body more now and choose to take care of myself better, so if I’ve canceled and been a no-show on you; now you know why.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated – if I could possibly do it that, I would.
My disability does not keep me bedridden, but I do have good days and bad days, and quite often my bad days can lay me out for 2 to 4 days in any given week. Certain times of the year are worse than others depending on the stressors. Stressors include weather, seasons changing, being over-zealous on one of my ‘good’ days, emotional or mental stress, hormone spike, among other things. So if I say I am not up to it… trust me I am not up to it.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
This is something I know all too well! I am famous for ‘forgetting’ to take my medications and for pushing the envelope on those ‘good days’. Quite often it is because I am involved in something far more enjoyable. I am very guilty when it comes to pretending I am a well person. this goes back to not confusing happy with healthy. I often have to remind myself that just because I feel well does not mean I am not sick.
Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
I get this. So often people ask, so what are you doing for your fibro? Well, I am living with it. There is no cure, there is only managing it. I take my meds, I’ve started walking regularly, and I keep my chin up.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
With everything that I have gone through, first with constantly being told that there was nothing wrong with me or that it was all in my head (this is going back 17 years when Fibromyalgia was considered – not a real condition – by many doctors); and then going through all the trial and error of finding the right prescription cocktail that would not make me feel worse; I am reluctant to try something new. I did however switch to Lyrica about 6 months or so ago and it is work to help manage it a bit better.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
I don’t mind the suggestions at all as long as there is no expectation that I will run right out and try it. Chasing after this disorder is time-consuming and exhausting and in my eyes a bit of a waste of time. If there was a cure, something that would make it go away entirely and permanently then hell yeah, I’d be right on top of that. But all there is, is management and that is what I am doing. As long as I have found something that works that I can tolerate i am going to stick with it until it does not work anymore. i rather be living than chasing down my illness.
Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
I depend on you – people who are able-bodied – for many things.
But most importantly, I need you to understand me.