Open letter to someone with chronic fatigue from imaginary boyfriend

Background

I have had adrenal fatigue for about nine years, Lyme disease for about one year, and a great boyfriend for four years.

Having these long-term health conditions makes it hard for me to be the girlfriend I want to be. Fatigue and illness make almost everything harder, from sex to patience to looking nice to being emotionally independent. I end up asking for a lot from my boyfriend. Needless to say, this affects our relationship sometimes. It's hard when on top of feeling bad and not being able to do things I want to do, being sick also affects something I value so much - my relationship.

After reading Ricky Buchanan's amazing Open Letter to those without CFS/Fibro at http://notdoneliving.net/foothold/openletter/, I decided to write a letter to people with chronic fatigue/fibromyalgia/long-term illness to explore what we might be able to do to make things easier for those who love us.

Granted, there are some efforts that are hard for people with chronic fatigue, so I have emphasized the efforts that I find easier while experiencing Lyme disease and adrenal fatigue. Other people might find other types of efforts to be within their abilities. In general, I think the trick is to do what you find non-taxing and not to worry much about the things that your condition makes difficult for you.


The Letter

1) I know this is very hard on you, but keep in mind that your illness is a challenge for all of us. Think about times when I've been crabby, and remember how hard it is on you when I'm not doing well. Now imagine this happening most of the time months or years. It's draining on me, too.

2) Please be as kind to me as you can. I know there are times when your condition makes it hard not to complain or to be irritable. I also understand that your abilities to control yourself or to make huge efforts are limited due to your illness. But please understand that your being pleasant to me and not making huge emotional demands on me is very important to me; and I'll trust that you're doing this as well as you can.

3) I know that sometimes your treatments and symptoms are most of what you've done that day and thus most of what you want to talk about. At times when you really want to tell me about these, please go ahead, and I'll listen. I like to know about how you're doing and what treatments you're using. However, just as you might get bored by hearing about the same topic from me for months on end, I do have some upper bound on how much I can hear about your symptoms and treatments, especially because talking about illness has some negative connotations that I still can't get my mind around completely.

What I mean to say is - tell me about how things are going with your condition when you really want to tell me, but if you could go either way, can you lean towards not telling me? Also, if you have interesting things happen in your life that aren't illness related, feel free to tell me about those, because it can help to balance out our interactions and to give me a break from the long-term illness topic.

4) On a related note, when you feel ok, could we just forget about your sickness for a while? I wish every day that you were completely well and we could just enjoy one another. So when we have a chance to experience that, even briefly, can we just experience it without talking about your illness?

5) I wish there were some way I could make everything better. Feel free tell me things I can do to help that you know I'll be able to do to your satisfaction. Don't ask me to do something if you won't be satisfied with how I do it. I especially like doing things that can alleviate your symptoms (e.g. back rubs) or help you to get better overall (e.g. going with you to doctor's appointments and picking up prescriptions).

6) I know there are times when you really don't have the energy to do much for me or to give much in the relationship. That's fine, and I can understand that. But to balance things out, could you make it a point to do nice things for me during those times when you feel well enough? For instance, give me extra affection or write a nice note or something (only things that won't tire you, of course). I just want to feel like you still care about me. Maybe do some extra caring when you're up to it, so that on average your level of caring will be about the same. And I can understand if you can't do certain types of caring (especially those involving exertion or patience) - I can be happy with whatever types of caring you're able to do.

7) I really want to be here for you, and I'll do whatever I can, but as I'm sure you understand these days, there are limits to how much one person can do. Insofar as you can, try to have other people who can help you, whether your counselor, your parents, your friends, or your doctors; so that I don't have to be stressed that you don't have anywhere else to turn if I'm not there when you need me.

8) I promise not to blame you, since getting sick isn't your fault. In a different turn of events, it could have been me. Even with your illness, you're still great to be with. I promise not to doubt you, or if I do, to bring it up so that you have a chance to respond to my doubts.

9) Please tell me what I'm doing right. It helps me to keep going when I know that you're noticing and appreciating what I do.

my boyfriend and me at the Fort Worth Water Gardens
my boyfriend and me at the Fort Worth Water Gardens

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Comments 2 comments

George 7 years ago

My girlfriend has chronic fatigue. We have been going out for about four months now, but due to the fact that she can't get out much we've only been on about 3 or 4 dates. I never get to see her outside of school and I don't know what to do. Is there any way i can help her? She's had it for a couple of years now and she claims shes 'over it'. It sounds selfish, but I'm getting a bit frustrated with the fact that we can never do things together. The furthest we've gone is a hug and held hands, and we're both 16 I have no problem with that, but the fact that I'm her boyfriend and i don't get to see her is quite frustrating. I am a bit shy but i feel that if i could be with her, even if I'm just sitting by her bed or something, i would feel better, because as it is I'm falling into a trap of insecurity and emotional pain. how can i help her and be with her at the same time? my email is georgieboy_090@hotmail.com


Justin 3 years ago

I have an ex and we just broke up over this... Can we please talk? If you still even look at this? justin.manley87@gmail.com

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