So this letter is written in the spirit of informing you, as I know you desperately want to understand this and in person I am not always able to be as upfront as I would like to. I know it is a very difficult thing for you to get your head around and understand. At times I am confused and it is happening to me, so I can imagine how difficult it is for you. I understand how hard it can be for others to appreciate the concept and accept the facts. So I want to tell you a couple of things about my life. There are things that I would like you to try to understand about me, but I appreciate it can be hard at times. I thought that maybe if you read this letter you will have more insight and know me a little better. Also it might be easier to process the information by reading it yourself than me explaining it.

I know that when you see me I do look well and healthy and it might look like I am not in pain or it might look like I’m not even exhausted. But 24/7 I am in constant pain and fatigue, although the severity does vary from hour to hour it never quits. Often when people see me they have no clue just how bad I am feeling on the inside, as my outer shell does not show, so this can add to the difficulty others have with understanding and believing me. I know it doesn’t help that I do go to great effort to disguise my pain & fatigue, because I don’t want it to show how bad I really feel because I can be quite a proud person. Plus this will only depress everyone, and make me feel worse. It is very true when people say “don’t judge a book by it cover.” But I know this can sometimes be hard not to do. It is only natural. I used to do it, but now I don’t. I think that my experiences have made me take a deeper look and not to judge and that goes in every aspect of life.

I know you know that the fact is everyday I have to spend most of my day in considerable pain and exhaustion. And when you see me I am putting on my bravest face and I do hide my true pains. At times I probably don't seem like much fun to be with; however I do try as I'm still me stuck inside this body. I still worry about normal everyday things and I care about a lot about my family & friends, and I still like hearing you talk about yours too. Try to treat me the same as before. Talk about whatever you want to talk about. I understand that you have pains and problems too, don’t feel you need to shelter them from me or that I have enough of my own. That only makes me feel excluded. I don’t want sympathy and please don’t be upset I am now happy this way, no of course I didn’t want my life to end up this way, no sane person would. But the fact is I have no choice in the matter. And I gave up trying to figure out why years ago as I will never truly know; it will always be a mystery. It’s not like an unwanted gift I can return so I just try to live with it and be happy when I can. I know it can be a struggle and there are days that it doesn’t always go so smooth but I try to be positive and live a happy life. You may look at my life and think it is not that good and it is natural for you to want better for me, because I know you care. But the fact is that my happy might not be your idea of happy. But having these conditions has made me truly appreciate the small things in life and I am content and happy most of the time, which is more than can be said for most.

However there is a difference between "happy" and "healthy". When you've got the flu or tonsillitis you probably feel miserable with it, but I am chronic and I've been ill for a while. In fact it can sometimes seem like forever. So I can't be miserable all the time, I work hard and have practiced at not being miserable. Part of me dealing with chronic pain is to hide it by distraction. Distracting the brain helps me to deal with some of the pain however this obviously doesn’t make it go away just limit the severity for short spells of time. So when you see me and I look happy it doesn’t mean I’m healthy and when you're talking to me and I sound happy, it simply means I'm happy. That's all. Please don’t analyze it as it doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. I have just learned to make the most of my time when I can and mask a lot of my bad pains & feelings. When I feel down my pain increases and it becomes harder to mask pain plus it is an energy zapper, so this increases my fatigue, which as you’ve noticed is very limited. This also applies to stress so I try to avoid being stressed as much as possible. But in anybody’s life stress in unavoidable. But with me stress seems to go hand in hand with my illness and the problems they bring. As with everybody in the world stress & depression drags you down but I guess for me that down or stress directly affects my symptoms. But please understand that stress and depression are not the cause of my symptoms just an aggravation, just the same as the cold weather is.

My conditions are variable and can affect people very differently. No two people diagnosed are exactly the same. It is commonly referred to as the “umbrella term”. Think of the diagnoses as an umbrella and what symptoms are under the umbrella depends on the individual. It's quite possible for some people to be able to walk to the shop and back and even work and drive, whilst others cannot walk at all and spend 99% of their time in bed. Please don’t get too upset if you notice that I’ve gotten worse and please don’t get too excited if you notice that I’ve improved. This will only make me feel worse and under pressure either way. Although I do realize that this is hard as I do have these same feelings deep down too. But after more and more of ups and downs this does tend to wane off. Nobody has an answer to “Why are they better than you “ or “Why are they worse than you” or “Why something works for someone and not for the next person” as there are many things that  are just unexplainable, and this is one of them..

Please try not to compare me to others although I know it is easily done and also keep in mind that one thing might work for someone that doesn’t automatically mean it will work for someone else.

Please understand that being able to do something one hour doesn’t mean that I can do that same thing the next hour. My cans and cant’s do vary from hour to hour and even day to day. Which I know is even hard for me to understand. With a lot of diseases you either can move freely or not at all, with this one it gets more confusing. One time you see me I may be able to stand up for an hour but then the next time I may not be able to stand up for even 5 minutes without flopping and needing a seat. This applies to most things in my life. One time you see me I may not be able to string a sentence together or get my words jumbled because I’m so exhausted but then there are other times you won’t be able to shut me up. One time I may be able to walk a long way the next I may not be able to walk more than a few steps. I cannot explain this it is just the way I am and after many attempts to work out why I accept that I am just made this way. I try to take things for what they are and go with the flow I hope you can do this too as it is something that is easier said than done.

I can not do everything I used to be capable of doing. If I was capable of doing these things, I’m sure you know that I would be doing them, believe me I would. I miss the simplest things you wouldn’t believe, things I used to take for granted. Getting out and doing things does not make me feel better, and can often make me seriously worse.

Please understand that when I say I have to rest, I do have to do it right now. It really is out of my control as hard as this may be for even me to believe. My body controls me most of the time and it does not let up. I have to pick and choose the things I do as I can't do a lot, so I have to prioritize. So please forgive me in sometimes being selfish, it is truly out of my control. Past experiences have taught me to pace and if I don’t go at my pace then I just burn out and suffer for a lot longer. But even at my pace the simplest task can completely exhaust me and can have repercussions for days. I am not lazy and I feel like I am very active as what I do for me is a lot. I honestly don’t have a choice I have to do things at my pace which I know must seem like a snails pace to you. I hope you do realize that your life may be very different to mine and don’t hold this against me. I have had to adapt my life to live the easiest and best way I can with what I have. But I’m sure you know that different is not better or worse or wrong it is just simply………different. I do have to make adjustments to my life. And I’m sorry as these changes do not just affect me; most likely they mean change for those around me too.

I know that when you suggest things you are only trying to help and I deeply thank you for your good intentions. But telling me about cures and telling me what I need is not the answer, I know you are only suggesting these things because you care and want me to get better. But the chances are I have either tried these things or I am trying them now, which I will gladly discuss. However it’s simply a matter of been there done that, I have worked with doctors, specialists and physical therapist in the past and am already doing the exercise and management program that I am supposed to do. I really am knowledgeable on my conditions, and am learning about my limitations every day. If you want to suggest a cure to me, then you can do, however it is probably not the best thing. This is not because I don’t appreciate the thought, and it’s not because I don’t want to get better. It goes without saying how much I would love to be cured and well again. The fact is that at first I tried all kinds of things, but then as time went on and with plenty of Dr’s trying to get through to me that there is no cure I started to accept this. And I realized that I was using up so much energy trying things that I was making myself suffer worse, not better and caused me a real bad time mentally as well as physically due to latching on to something that wasn’t possible and not being able to cope with being different was also very frustrating that I just wanted to change it. So basically if there was something that genuinely cured people like me then we'd know about it, believe me if something worked we would know. I have learned that the best approach to these conditions is management programs & treatments which are all trial and error and differ to each individual. If after reading that, you still want to suggest a cure then I do appreciate the fact that you care, but don't expect me to rush out and try it. I'll take what you said and explore and research it fully. You might look at this as giving up but I am willing to try many things and always keep up to date on various treatments and management techniques. It is not about giving up and more about moving on and acceptance. Being tied up in hopeless dream cures and being focused on things that are unattainable causes me more fatigue and pain, not to mention disappointment. And lets the real true things in life pass by. I am starting to accept my life like this and not dwell on what I don’t have and appreciate what I do have and make the most of these things. You know “the glass is half full” saying, is a great method and I try to think this way. I am currently learning to manage and adapt my life, but that doesn’t mean I don’t try. I constantly try as I know you really do try to, to be even taking the time to read this shows you do.

Please understand that some statements said to me hurt and at times I can be sensitive to them. I do try not to be so hurt, but this is my life and it is very personal as I have to work very hard everyday just to live in it. Some statements made like "You just need to push yourself more, exercise harder..." Feel like a slap in the face. Statements along these lines are mostly said by people who don’t know me very well and do not understand about these conditions but still it does feel very hurtful. People are so misinformed about all these conditions and because they are obvious to me as I am living them, I sometimes forget that others don’t know about them. I know it doesn’t excuse their behavior but I do understand it is just because the awareness is not out there. I do try to understand that myself.

Having these conditions has affected my personality. Sometimes I can be very cagey about my conditions and hide my true feelings, this is just a coping mechanism that I have adopted it is nothing personal. I will try to be more open in the future. I sometimes take offence and get defensive of things I shouldn’t, it's because of verbal attacks in the past regarding my symptoms and conditions. In all walks of life conclusions are often made at those that don’t fit into the so called “normal” label and I have experienced this many times. In the past I have had doubts and accusations thrown my way that have taken their toll and even made me lose faith in myself at some point or another. I do realize that I will always be ridiculed and I do deal with this much better than I used to.


In many ways I depend on you - people who are not ill - I may need you to help me, and I definitely need your support. You give me advice and moral support, and I thank you so much for that. And although I am the one with these conditions the ripple effects that are caused by these conditions affect you directly to. So I think it is most important for us to understand each other.

So thank you so much for taking the time to read this letter I have wrote and from now on I hope you understand me a little better and I will try to understand you too.

XXX

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