Thanks to my dear Facebook friend Kat, who understands what I am going through, here are some points regarding illness and people.
My illness is a difficult one to understand, even for me. Many of the problems it causes are invisible and difficult to anticipate. I need you to understand that my life is always subject to change because of the unpredictable nature of the illness with which I must live. First, let me explain the depth of this illness.
1. I never get deep sleep so I never feel rested and am always tired.
2. My vision, hearing, sense of smell, and sense of taste all can be affected. I may get a very dry mouth, very dry eyes and/or blurry vision, or be very sensitive to odors, noises, lights.
3. The fatigue I get can be overwhelming — and some days I cannot get out of bed no matter how I try.
4. There are emotional side effects — like depression, memory loss, and difficulty concentrating.
5. The medications I take have physical side effects- weight loss/gain, changes in my appearance, feeling doped up, mood changes.
6. I may need to use aids like a helping hand, or sometimes even use a scooter. Other times I may need no help at all.
7. This is not contagious, and there is no evidence that it is something I have inherited or will pass down to children.
There are some things you can do which would make it much easier for everyone and I would be grateful if you would take the time to read this and try to understand.
1. I will have good days, bad days, and many days in between. I can’t always tell from one day to the next, or even sometimes from one hour to the next, how well I will be, so please be forgiving when I must change plans at the last moment. I don’t mean to let you down.
2. Some days I will have energy, and the next day I will be half dead. It’s just the way things are — please don’t say “You were okay to do this yesterday, or last week…” I can’t help it.
3. Please don’t judge me as a complainer, whiner, melodrama queen, or as a person making more of their illness than seems necessary. Many of the problems I have are invisible to other people so please be patient, understanding and compassionate.
4. I get lonesome and miss being part of the active life I once lead. Remember me — call me, email me- don’t give up on me. Too many have already done that…
5. This isn’t my fault and if I could I would get rid of it. It is not all in my head!
6. It’s okay to talk about what is happening. I would rather you ask than pretend you haven’t noticed how different I am or just avoid me. It’s okay for us to talk about how my illness affects you, too. I won’t see it as a betrayal if you talk to me about your frustrations with my illness as long as you don’t blame me.
7. It’s okay to say “I know you don’t feel well, but I don’t want to hear about it today”. Don’t feel that you are obliged to listen to me, but if you ask how I am, I am going to tell you so if you don’t really want to know, don’t ask! I will try to remember that although my illness is a huge part of my life, you may not want it to be a part of yours. If you find me overwhelming, tell me! Challenge me, but please do it with love and compassion.
8. Don’t try to tell me that all I need is a little exercise, or just to get out, or try a certain pain tablet, or some new treatment because it works for you or someone you know… Please don’t feel rejected if you try to offer me a solution for my problems and I don’t take you up on it. I am under close medical care and am doing everything I can.
9. You may think I just need to push myself a bit harder or that I am giving in to things too easily. One of the problems with this illness is that if I try too hard, it can set me back considerably. I have to be more patient with myself and accept my limits — I don’t like it this way either but I have come to realize that one day of trying too hard and doing too much could make me much more ill for weeks. I need to be slow but steady.
10. Sometimes, I need to sit down and rest, right away. When it gets like that, I can’t wait… I really am at the mercy of my body and even though it may seem selfish I know that if I don’t take care of myself, my body will get even with a vengeance because that is the nature of this disease.
11. Please don’t tell me I need to lose or gain weight. I know. I am doing the best I can. Don’t criticise my eating, please. And don’t tell me how horrible I look with my long hair, which I have not been able to have cut in almost a year. It won’t help either of us.
12. I don’t choose to be down and miserable but they are part of this illness. I need you to remember that I didn’t choose any of what this illness has done to me — I am struggling to learn how to manage, to cope with what it does to me, to grieve the loss of my health and to do the best I can to live the best life I can. Although I am grieving the loss of who I was before this illness struck and sometimes I get so frustrated I just can’t help feeling sorry for myself, it’s not just in my head — it is an effect of the illness, too, that I become frustrated, angry, and anxious.
13. Sometimes I will have brain-fog. It’s common in this illness to have moments when your memory is poor, or to find it difficult to think clearly. It will pass. It’s not permanent — so if something is important to you please don’t forget to remind me! I will be grateful. It’s also ok to remind me to write something down, or to check back with me later. Please don’t think I am ignoring you, being difficult, or just don’t care. I feel terrible when I forget. It’s because no matter how hard I try I can’t sleep well, and medication doesn’t help because sleep from medication is not the right kind of sleep, either.
14. Little things like calling me every couple of days just to check in- sending a note, card, or email can make a huge difference. If you can, please reach out to me. Even if you can’t do anything specific, just be my friend. Your friendship is the most important therapy I have.
15. Please respect handicap parking and encourage others to do the same. Sometimes, people with illnesses like mine can’t get out if they have to walk far — if everyone respected handicap parking, life would be easier for me and people like me who need those special spots. Defend handicap parking and it makes a real difference.
All in all, I need you to realize that I am the same person I have always been — my heart, soul, hobbies, interests, sense of humor, and mind are all still there — it’s my body that is turning against itself. I am more desperate for your love and acceptance than I am able to tell you. Please try to understand. Please accept me the way I am, please forgive me for the things that have changed, please forgive me and try to understand if I disappoint you, try to accept that I am not in control of what this is doing to me. Please forgive me if I let you down. I know that these changes are hard on everyone around me, too. I wish it could be different, for all of us. With time, compassion and love, things will eventually settle and we will all adapt.
These are the things I will try to offer you:
1. I will be honest with you about my limitations, and if I need to change plans I will try to be as considerate as I can and tell you as soon as possible.
2. I will ask you for help if I need it, but I will accept if you can’t help. I will not have any hard feelings if you say No — I will respect your limits. Please don’t ever feel guilty for being honest with me. I will try not to take advantage of your kindness and support.
3. I will accept if you ask me to stop talking about my problems and what is wrong with me… I don’t always realize that I may getting a bit wrapped up in myself and my illness sometimes, and I don’t want to overwhelm you- just be honest with me.
4. I will try to explain honestly if you ask me about my illness, symptoms or medication.
5. If I am feeling sorry for myself I will try not to take it out on you.
6. I understand that you also need to take care of yourself — if you need time, space or to get away for a bit, just be honest with me and I will do the best I can to understand.
7. I will do the best I can to keep myself well, by taking the medications as I should, by doing what my healthcare workers advise me to do. I won’t make myself any sicker or fail to take care of myself.
8. I will forgive you for finding it hard to understand. Took me a while, too. Thank you for reading this and trying to understand.
*** The above is meant for all who need to know what we’re going through even though they’ll not entirely understand where we’re coming from. It at least sets boundaries and may stop the pests who keep saying, “Just get up and walk around; you’ll feel better…” Or worse, those who ask what hurts you, and when you tell them you feel no pain, say “Oh, then it’s not that bad”; or even worse, those who say “But you don’t look sick…” (Too many, in my case!)
Thanks for reading this. I hope you now understand how I feel. And remember that I am not the author. It is adapted from Mary Jane Jarvis, through Kat. It was reassuring for me to have read it. Now, you see, and I do too, I am not the only one who feels this way!