I’ve been noticing how I no longer feel as “different”, now that I feel healthy so much of the time. I don’t think it’s just coincidence that I don’t feel as isolated when I’m not symptomatic.
But this weekend, I was in my husband’s parents home and the air conditioning didn’t work well. Some rooms were cool while most were very hot. I understood it was impossible to regulate it so everyone was comfortable and I didn’t want to be a “pest”. But, heat really gets to me (it’s an MS symptom). I found myself feeling more and more spaced out, foot dragging, eyes drying up and then peeing on myself –all because of the heat.
After asking my husband several times over the days to turn the a-c cooler (and he did but someone kept turning it warmer!), I finally said that the air conditioning simply had to be turned down Even if it was uncomfortable for some. Everyone seemed to look at me like I was an unreasonable child. They tried to explain what the problem was — but I wasn’t interested. I just couldn’t stand feeling so physically miserable and it seemed as if no one got that this wasn’t “just menopause” (not that hot flashes aren’t horrible). I just wanted some acknowledgment that this is really hard for me.
So, then I said, “Look, I have MS and heat makes me loose my bladder functions. Do I have to get more specific than that?” I had their attention then -and I got their empathy.
Oh, do I wish I’d done it more gently – not so accusingly. But I know that sometimes my words don’t come out nicely.
So, what about the feeling of being alone, isolated, even alienated when you’re not doing well? I think we have to look inside our souls and ask ourselves, was this always a part of our experience? Did I always feel a little difficult, a little different? Yes, I think I did. But, I learned to deal with it so that it wasn’t something that came up. Being sick brings it all up again. I think that living with chronic illness brings parts of ourselves to the foreground that we’ve put in the back ground, parts of us that are painful and don’t cope all that well.
None of it is all of who we are. That’s the good news.
Rosalind
Stephanie says
I couldn’t agree more with this entry. Every day we are reminded from the time we get up in the morning until the time we go to bed (if we are lucky to get some sleep) that we have a chronic illness. It is a double-edge sword that those around us have to be reminded of our needs for accomodations.
We work so hard to keep healthy, and sadly, it doesn’t take much to aggrevate our symptoms. For so long, I tried not to be an “inconvience” to others because of my lupus or celiac disease. But, I realized I had to in big and small ways assert myself so that as much as I can, I can enjoy every day that I have on earth. When the bad days come, they are really bad days. We shouldn’t have to risk having bad days.
As hard as it is, it is better to educate people about our struggles. I think in the end that a decent person would feel worse if they had a chance to help you out and you needlessly suffered because you didn’t want to have to once again remind your family and friends that you have an illness.
Stephanie
Rosalind says
You’re so right, Stephanie. I think it’s the yin and the yang – trying hard not to burden or be a burden but also not wanting to isolate ourselves. Thanks for sharing.
Diana Brice says
I think that chronic illness can be isolating not only because we feel different but because we are different. It takes a completely different set of living skills to maintain even a semblance of normalcy when you have medical problems. For 14 years since I was diagnosed with Lupus I tried to “pass as healthy” most of the time, trying to keep up with others who don’t have medical problems. But recently I have “thrown in the towel” so to speak and admitted to myself that I do have limitations in what I can and can’t do and that it’s okay. Strangely enough I feel more liberated and enjoy doing what I can do and not worrying about what I can’t do anymore.
Rosalind Joffe says
Hooray for you, Diana. It is liberating to throw in that towel. Let’s all give one big toss!