Our Attitude sets the Playing Field
I once was asked by someone to ask my friends how they thought fibromyalgia had changed my life. I kind of thought I knew how my friends would respond, but honestly my health/fibromyalgia isn’t a topic my long-time, pre-fibromyalgia friends talk to me about much. I asked one of my good friends since 7th grade the question. She told me that, at first, she thought I “never did anything fun, anymore.” She followed it by admitting that she didn’t really understand what was going on with me or how my pain was effecting me. She said she still doesn’t feel like she really understands it. I was glad she was being so honest with me.
At first her response stung a little, for many reasons. One reason was because back then I feared my friends would think I wasn’t as fun anymore. Remember, my fibromyalgia started my freshmen year of college, when most people are vivacious and partying it up. My diagnosis came my sophomore year. The second reason her comment stung was because just as much as I wanted my pain to go away, I wanted to be out, having fun with my friends. I wanted to feel just as included, just as fun, just as free spirited, just as young. Lastly, I can’t help but be a little hurt by the fact that no matter how many times or different ways I talk about my fibromyalgia it seems to go right out my friend’s other ear. Keep in mind, I don’t do this often, so it isn’t like she is tuning me out because she is sick of hearing about it. When I started this website, I’d hoped she might read some of it, but I don’t think she has.
When I thought further about her response I realized one major point. Part of why she didn’t think I “did anything fun, anymore” was because of how I interacted with her about doing fun, physically demanding things. I was still getting my fibro-legs (you know, like sea legs?). Internally I was upset and aggravated that I no longer could do all the things my friends did, in the same way. Nowadays I am much more matter-of-fact about what I can and can’t do. Looking back, I wish that instead of sharing my worry about how my physical limits would impact an activity, I’d have talked to her in a positive manner. I didn’t know any types of solutions back then, but I could’ve suggested things I thought might’ve been easier. I could have made sure to express how much fun the activity sounded, declined and at the same time tried to make less physically demanding, fun plans for another time. Maybe if I had appeared more optimistic (instead of scared) about having fun, she would have thought I still did fun things.
Have you noticed how your attitude has effected how others respond to you?
I participated in much less dancing & drinking in loud bars, than my friends*
*Image Credit: from www.wikipedia.org
Posted: April 4th, 2011 under Communication, Living with Fibro.
Tags: My Philosophy, School
Comments
Comment from Ashley
Time April 4, 2011 at 12:11 pm
How my attitude about my health has changed how others respond to me :
Being more open about my health has been a big change for me. I used to hide it in the fear that I wouldn’t be accepted and that people wouldn’t want me around.
Or if I did tell them I’d minimize it for their comfort or I guess that’s what I thought I was doing.
In the last few years I’ve been more open and comfortable talking about my health with others. To my surprise people have been mostly supportive and those who aren’t … well it says more about them then it does about me, so really do I need them in my life?
I’m getting to a point where I am just going to be me – my chronic illness is a part of my life; it makes me more accepting and compassionate and I’m OK with it.
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Comment from Gina
Time April 4, 2011 at 12:35 pm
Great article on a complex topic. I think that since I realized Fibro is like gravity I just accept it more, except for the days when it turns in to Kryptonite. I can honestly admit I didn’t understand this illness at all before I experienced it. So asking others to “feel my pain” is just wasted effort in many cases. But I do insist my inner circle realize my limitations and that I usually cannot do activities two days in a row. That has helped immensely.
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Felicia Fibro Reply:
April 4th, 2011 at 12:55 pm
Great point, Gina! While we don’t need our friends to fully understand what we feel like, we do need them to respect and believe our boundaries.
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Comment from Karin
Time April 5, 2011 at 10:00 am
I have had fibro for about 25 years. I managed a relatively normal life for the first 15 years. After that, it began worsening til now when I am in constant pain and on pain killers and hardlly able to do anything. My biggest problem, at least what hurts me the most, is playing with my grandchildren. They are 1 and 3 years old and they live out of state. We drive 9 hours to visit them once a year and they come here once a year. All that traveling is hard for everyone but for my grandchildren, anything! After a visit, where I will push myself til I’m about to drop, I will have to spend at least a week in bed! It’s worth it to be with them but it’s so hard and I hate that even taking them to the zoo I have to sit more than walk! Fibro is a very frustrating illness and it doesn’t go away! Good luck everybody!
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Felicia Fibro Reply:
April 5th, 2011 at 9:50 pm
Karin, yes, the aftermath of those rare special events that we decide are important enough to push through are rough! Have you ever considered using a wheel chair at the zoo so you’re able to keep up with your energetic grandkids?
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Comment from Karin
Time April 6, 2011 at 6:25 pm
Hi Felicia, I have thought of a wheelchair but I’m actually afraid to because I don’t want to say, oh this makes it much easier! I don’t want to be in a wheelchair although I will give in to using a cane I think. I’m only 61 and this is really doing a job on my head!
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Felicia Fibro Reply:
April 7th, 2011 at 5:24 pm
I agree, Karin. Deciding to use a wheelchair is much more a mental than physical decision – especially the first few times!
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Comment from Maniek
Time April 7, 2011 at 8:56 am
Hi Felicia,
I really know what you are talking about. Less than a year ago me and my husband moved to the Caribbean from Europe. We had to make all kinds of new friends, which is difficult if you are bound by this disease. I still managed to meet more people than I had envisioned and it makes me very happy. Still though, its hard when all of them go partying, asking me to come (eventhough they know I’m too sick most of the time) and I have to tell them no. It makes you want to cry, because the friendships are still young at this point, and you want to get to know people better.
When this happens, I miss my friends from Europe. But to be honest, some old friends of mine still don’t really know what is wrong with me. I had an eye-opening moment with an old time friend that came to visit me in my new home. Because she didn’t know the surroundings, she wanted to explore everything. But with me, the whole time, the whole day. I had to explain to her, that my illness is worse in the mornings, and I do have to sleep in. She did not understand. Also I had to explain that I could not go on the road with her 24/7 in the time she would be here, to explore the island. She also did not understand. She does now, now she is home again in Europe, since she has seen with her own eyes what happens if I go far beyond my own limits (what I did, because I did not want to disappoint her when she was visiting). I got so sick, with so much pain, it shook her up.
Later though I thought about this. Our friends don’t get to see us at our worse hours. They HEAR it, over the phone, telling it them later over dinner, etc, but the don’t get to SEE it. Of course not, you don’t want your close ones to see in how much pain you are, so you put on a happy face. It took my parents a year to understand how terrible I was feeling most of the time. My mum has seen it while she was helping me with packing for our immigration. Because there were days she was coming, and although I was sick, so would come anyway.
Although it’s hard to say no to my new friends at this point, I do. I am honest about my illness and it’s such a relief. It’s better than to hide it and tell everyone it’s okay, because you do not want to scare them off.
Although it still hurts when I notice that people do not understand, I can more easily tell myself no ”just leave them, they’re not worth your energy, especially since you got so little of it”
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Felicia Fibro Reply:
April 7th, 2011 at 5:41 pm
You’re right, Maniek. It is rare for our friends to see us in out of control pain where we can’t even think straight and are thrashing all around. This makes it harder for them to understand, because verbal descriptions are even to understand if you haven’t experienced it or seen it. I’m glad you’ve also found relief in being honest about how your illness!
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Felicia Fibro Reply:
April 4th, 2011 at 12:46 pm
Thanks for sharing your evolution, Ashley! I think that being able to be open about our health really adds an entire new dimension of closeness to those friendships. All the friendships I have formed, after a couple years into my diagnosis, have been like that. It would be hard for me to want to foster a new friendship that couldn’t be like that, because it almost feels like I can’t be my true self.
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