Please enjoy this guest post by, Barbara Lewis Goforth. This post is so real and truthful. It is something that every loved one of someone with a chronic illness should read.
Thank you Barbara for letting me share your words.
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I wrote this to try and help my family understand what I go through. I hope by passing it on that it can help someone else
To My Family and Friends,
Please take a few minutes to read this letter. I have taken many of my minutes to do things for you, so I would appreciate your willingness to learn a little bit about what I am going through and the way it makes me feel.
Most young adults start the day with an unlimited amount of possibilities and energy to do whatever they desire. For the most part, they do not need to worry about the possible debilitating effects of their actions.
I do.
The hardest thing I’ve ever had to learn is that I have to slow down and not do everything I want to do. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.
My fatigue - I am not merely tired. I am often severely exhausted. I may want to participate in physical activities, but I probably can't. Please do not take this personally. If you saw me shopping yesterday, but I can't help you today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability yesterday.
My forgetfulness - I may not remember what I promised to do for you, even though you told me just seconds ago. I may not remember to call you back—but I am not ignoring your phone calls. My problem has nothing to do with my age but in my opinion, it's related to the fact that my sleep is incredibly unrefreshing.
And please don't ask me,"Are you still working? Why don't you go out on disability?" Going to work and not thinking about my issues is sometimes the only "normal" that I experience. I have worked hard my entire life, why should I have to give that up now? Why should I let my illness defeat me to the point of giving in, throwing in the towel, to only sit at home, become less active, which will cause more pain and more depression.
I do not have a selective memory. On some days, I just don't have any short-term memory at all. Trust me, this is something I wish would go away. It is extremely difficult when I’m trying to memorize anything.
My intolerance - I can't stand heat. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. Sometimes I am freezing when others are perfectly comfortable. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. I can’t help it.
My depression - Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting exhaustion and pain can cause depression, especially at this exciting and active time of my life. Your sincere concern and understanding can pull me back from the brink of sadness. Your snide remarks can tip me over the edge.
My good days - If you see me smiling and functioning normally, don't doubt my previous confessions of exhaustion. I suffer from a chronic illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. So don’t say, “Oh, so you’re all of a sudden doing better today? I knew you’d get over it. I told you it was just all in your head”. Trust me, this doesn’t help. If you love me like you say you do, keep your opinions to yourself if you feel like you must doubt my sincerity.
And there are those who say "think positive and you will feel better" or my all-time favorite "get tough, exercise to build strength"… although if you’d take the time to learn about what I’m suffering from, you’d know that exercise only has debilitating effects on someone who is already grasping for any ounce of energy left in them.
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. It doesn't mean that I'm not in a lot of pain, or not extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome to.
Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to cry....
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike, you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my frustration about the way I feel is just as real and just as debilitating. And in some ways my illness may be more destructive because people can't “see” it and do not understand....
I have been accused of "playing games" for another's sympathy.
I have been told it is all in my head.
The hurt I experience at those words scars me so deeply I feel I have let my family down again; and still they don't understand.
I have been called unreliable because I am forced to cancel plans I made at the last minute because I’m so exhausted that I can’t even stay awake. Trust me, I’m not blowing you off to do something else that I’d rather do that day. I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. I feel like a helpless child at times...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
I wish I could do more or know in advance what I will be capable of each day. I hate that you think I'm lazy or trying to dodge responsibilities. That's not it. Sometimes I just can't and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.
Sleep, when I do get some, is restless and I wake several times a night drenched in sweat and insatiably thirsty. I sit in a daze sometimes with indescribable brain fog ridiculing me as I stumble and grasp for clarity.
At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is just part of dealing with the stress, and I promise I'll try to keep it under control. I don't mean to direct the anger and frustration at you but I will sometimes fail.
Sometimes I need to talk about these irrational feelings. Just listen, okay? Please don't tell me how to feel or how not to feel. You can't fix my feelings. Please don't judge them: just accept and acknowledge them. When you say such things as, "Your illness must be terribly frustrating for you," I feel understood and comforted. But don't tell me that you know how I feel, unless you also deal with a chronic illness.
As I try to maintain my dignity as much as possible, please do me the small favor of trying to understand and learn about what I am going through. So many of my "friends" no longer talk to me or even acknowledge my presence, I have seen some in public and its extremely noticeable that they are trying to avoid me at all cost. Not answered their phone when I have called because I needed the support of a friendly ear or just needed to hear someone's voice. I hope you will gain some sympathy in life, for one day, you will or may have problems too, and I would hate for you to go through what I go through.
Please understand that chronic pain is variable. It's quite possible (and for many, it's common) that one day I am able to walk a long distance and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able to, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
On a brighter side I want you to know that I am still me. I am still the girl who loves to give, loves to smile, loves to make you proud… I am still that girl. I still have a sense of humor, and if you take the time to spend with me you will see that. I love to fix things for people to know that I made their problems go away. I am fun to be with if you will spend the time with me when I’m feeling well enough to do so; is this too much to ask?
I love you and want nothing more than to be a part of your life. And I have found that I can be a strong daughter/friend/sister/mother in many ways. I can be your confidant, your friend, your support, and many times I will be the one to do the research and find the answer for your problem; many times I will be your biggest fan and the world will know how proud I am of you and how honored I am to have you in my life.
So you see, you and I are not that much different. I too have hopes, dreams, and goals for my life, but I also have to battle this demon called a chronic illness every day. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? If you have, I was there for you, wasn’t I? If you have to fight something like this in the future, I will be by your side, win or lose, I promise you that; I will be there in every way that I can. I will give all I can, I promise you that. So please, do the same for me.
I have to handle this thing my own way. I’ve done the best I can thus far. Please understand that I am in a battle, and I know that there is little reality of a cure or effective treatment, at least right now.
I want to be assured that I can trust you and that you will be available to listen and try to understand. And I'll try to understand that you can't always be available.
I am not giving up. I am hopeful. I have complete faith that I will somehow recover from this, and once again live my life to the fullest. But in the meantime, I need your encouragement, love and understanding. I know that I asked a lot from you, and I do thank you for listening. It really does mean alot.
