I love that people care enough that they want me to get better. I just wish they’d stop asking me how I’m doing.
Last fall I wrote about how difficult it is to reassure people, but yesterday brought it all crashing back harder than ever. People ask how I am and they want so badly to hear that I’m doing better. I’ve had to ask people to stop asking. I know it’s hard for them, but it’s a lot harder for me. Thankfully, they’ve all been respectful of that so far.
Unfortunately, that doesn’t work for everyone, especially my grandparents. There are two reasons why it’s especially hard with my grandparents. For one thing, their memories aren’t great these days, so they’ll ask me how I am, forgetting that we just had that same conversation the day before. I’ve asked them to back off, and they did for a while, but then they forgot. This is not their fault. But it’s still difficult.
The other problem is that their health isn’t great. I know that a big part of it is that they want to see me improve before they die, which could be soon. It used to be that they wanted to see me married while they were still around. Thankfully, they’ve adjusted their expectations of that (though I’m sure they’d still be thrilled to see me married, just like I’ll be devastated if my future spouse never meets them.) The hard part of this is that they are being so selfless. They want to help me and are frustrated that they can’t. There is nothing they can do now, but they still want to know that I will be ok in the long run. I want desperately to assure them that I’ll be fine, but I just can’t do that. I’ve thought about faking a fiance. I could probably manage that, actually. But I can’t fake my health. There is just no way I can pretend to be healthy.
So yesterday was another hard day. Again, they asked how I was doing. Again, they were disappointed that I’m not all better. Again, they talked about me going back to work and again, I had to explain that I can’t do that right now. Again, I avoided the obvious, that I may never improve. I came home wanting to cry. Just writing this I’m getting tears in my eyes, something that almost never happens. It is so hard to see the people I love hurting. I wish I could get better for them, but of course, if I knew of some miracle cure, I’d have done it already.
There’s really no choice. I will keep plodding along with the various treatment options that I’m finding. I will continue to research doctors and other medical practitioners, medications and diets and other treatments. I hope that sooner or later something will work. In the meantime, I will have to continue to tell people that I am not better. And I will have to continue to endure their sadness.
A big part of being chronically ill is the guilt you feel for not being able to do the things that you could before. For not being able to contribute financially because you can’t work anymore. For letting people down when you have to say “no” because you just don’t have the energy or you are having a very bad pain day.
I get it. I have the same issues.My father in particular thinks “if only” something were to change to alleviate my stress levels, I’d get better. If I could just get outside and have some fresh air and exercise, I’d get better.
I’ve come to just agreeing with him, “I hope so too dad.” And try to move on. By minimizing how much we talk about my “illness” it makes talking at all so much easier.
I have to say though, without the support and understanding friendship of the lovely people I’ve met on Twitter, I’d have been in a very dark and lonely place. It just seems that the ONLY people I can talk to are those that have the same symptoms/conditions as I do. Especially the chronic pain and fatigue.
I had to just forgive myself and let go of the guilt. Do what I can do and be grateful for the love and support I get online from people who really “get” what I am going through.
*hugs* It’ll get better hon. Just remember you have an online family too!
I’m glad you were able to find such a great online community. I’ve only discovered it in the last year, but already it has helped so much.
I am lucky to have a lot of understanding people in my life. This is partly because my issues started in childhood, so my friends only know me this way, and understand that I have limitations. Still, it’s hard when things get worse, and of course no one wants to see that.
Thanks for your support. And you’re right, there’s no need to feel guilty; after all, we certainly can’t control this.
Bless you sweetie,
Sadly you are not alone. Until you’re faced with an illness with no cure you have no comprehension on how difficult life can be. I sometimes think it is an ingrained human trait to ask ‘are you better yet’? It is difficult to understand no I will never be. Then the response back have you tried …… equally frustrating.
Maybe like me you still find it hard to accept that you will never be well and family and friends pressurising you about being well is like rubbing salt onto an open wound. Because the reality is you only have a tenious grasp on everything happening and dealing with others feelings is just too much – sometimes.
Lots of hugs
Lorna, thanks so much for your support. Yes, it can be hard to accept that I will never be well, but over the years I have come accept that in a healthy way. I hope that in time you will too. Good luck.