I got together with friends and family for dinner tonight. We had gotten together to celebrate a birthday. We had a good meal and then hung around the dinner table for quite a while just catching up. If you have read my blog for some time, you know that I have Fibromyalgia. Well, tonight I was sitting back having a good time and my Fibromyalgia started acting up.
I had been sitting too long and got a horrible cramp in my lower back. My leg tightened up and I had to get up and stretch my leg to ease the discomfort. When I went back and sat down, I felt embarrassed. I don’t like a lot of attention put on me and having to get up felt like a spotlight had been placed in my direction.
One of the people at dinner has struggled with a variety of health problems of her own. She has Rheumatoid Arthritis and some of her symptoms are similar to what I deal with. We got to talking about are health issues and she brought up how she was okay dealing with her symptoms, but it’s people’s reactions that can be hard to face. I know just what she means and was so glad she had brought it up.
My friends and family really don’t understand what I’m going through which is understandable. The worst part of having these type of health issues is when you have to cancel plans or cut an evening short because of pain or just general exhaustion. My friend spoke of all of the times that her friends got upset when she wasn’t up to going out or made her feel bad by saying that if she could sit at home, she could sit at their house.
The most difficult thing to express to others is that when you are having a flare up, you are so tired and having a conversation is difficult. You don’t feel particularly coherent. There is a tremendous amount of guilt feelings about letting others down when friends say that you aren’t around as often as they would like to see you. The worst part is knowing that if you were to go, you would be a downer on the person because you would be sitting like a lump in pain feeling too exhausted to do much other than to stare into space.
I hope that people who know of someone with an autoimmune disease realize that you never mean to hurt feelings or disappoint anyone. That you are constantly trying to hide your symptoms in public and wish more than anything that what you were going through wasn’t a part of your life.
It was so nice to discuss this side effect with another person who was experiencing the same thing. I hope that if you know of anyone that is facing a health issue that you don’t take a cancellation or an evening cut short personally. Trust me when I say, that person is more disappointed and discouraged than you can imagine.
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Hi Wendy, As a person who suffers greatly from chronic severe crippling at times pain. It is extremely humiliating having pain control my life. Getting that warning if I make it out of the house. It was even worse when I had to finally realize that from now on that those who are so cruel as well as ignorant regarding my chronic severe pain have no place in my life.
The icing on the cake came from the person who I fondly refer to as “Joan Crawford.” My mother. I had what I do know that I spoke with for the last time in my life. I had to finally give her the hook as she said something so cruel and ignorant but of course I had to consider the source her and her equally ignorant sister. I had been trying to keep a civilized relationship with her as my God Mother had asked me to. She had never been supportive at all from the beginning regarding when I first got sick over 3 years ago. Thank goodness for my dad. On top of severe chronic pain that I have been trying to come to terms with. Then on 3/1/13 I got hit by a car as a pedestrian in a cross walk with the right of way for the 2nd time in 3 years. That cruel ignorant person had the audacity to interrupt me on the phone when I was trying to be nice to tell me that I was faking my pain and near lack of ability to walk that I was faking the pain that has stopped me from being able to make it down the street while walking with black out pain that people can see the pain on my face as I am not able to hide it any more. You know how we have those masks that we try to wear? They don’t work anymore. I am in enough pain already that I don’t need the ignorance of MY MOTHER who may not be able to admit it to herself but she does hate me and it is probably hard for her to admit it because a parent is not supposed to hate there child. It is very painful to be told that you are faking something from your mother. Hence the name Joan Crawford.
The last thing that we people living with chronic pain for whatever the illness. Ignorant statements as was mentioned in this article.
It is bad enough living with chronic pain that stops you when you are use to going and doing what you want to do and you are not able to do what you want to do.
It hurts but we have to do what we have to take care of ourselves. Be true to ourselves and do what we have to keep the toxic people and things in our lives. We have enough to deal with living with what we have. I know that I am still coming to terms with my reality. I refuse to allow anyone else in life make me feel even worse due circumstances beyond my control nor ought anyone else.
Peace and be as well as you can be. That is all that I can do.
Thanks for sharing such a personal experience. I wish you all the best.
Thank you for posting because I do know of others experiencing this problem and I never viewed it as embarrassing, so it’s good to know so I can reassure them it is okay.
I’m you liked the post. Thank you so much.
I just wanted to say that I fully understand what you said. The way others react to you, can be as painful as the illness itself.I too have fibromyalgia as well as sjogrens syndrome and lupus. I am continually in a flare because I am unable to take the medication to control it due to a heart condition. My main problem is related to my sons reaction to my illness, he is 18 at college, working and lives at home with his fiancee. We get on well except on my worst days, when I need him most then he is awful. My husband works 12 hour shifts, I just can’t make my son understand how it is for me on those days and that I’m not lazy, unreasonable or demanding just very ill. This makes me upset snd stressed, which makes everything worse. Any ideas how to get through to him? In my job I help others with problems, yet I can’t help myself!
I am so sorry. I can’t even begin to image what it would be like living with all of those diseases without medicine to ease the symptoms. I hated taking medicine and tried backing off of them several times with horrible results.
I wish you all the best,
Your words in this post couldn’t be truer for me either, even if I had said them myself. I don’t have fibromyalgia, or MS, but I do have permanent nerve and disk damage from a serious injury. Since the scars don’t show on the outside, and I’ve gained a LOT (45lbs) of weight, it’s hard for people to realize just how bad it is.
I’m in school full time, and I can’t even take care of my home properly, and I find I’ve totally withdrawn from “real life” people because I’m ashamed of the house, and I’m just too damn tired to do the things “real life” people want to do… I don’t know how some people manage to do it all.
Thank you for posts… all of you. Makes me feel not so alone! xo
I’m so glad you like my post. I know just what you are saying. Unfortunately I have been there. It’s such a downward spiral. The one thing I can say is that people never care about what your house might look like nearly as much as you’d think. I’ve had times where I was so embarrassed because someone would stop by and my house looked wrecked. Strangely enough it gave some people comfort to know that they weren’t the only ones that had a messy home. Sometimes life just gets to busy or we just don’t have enough energy left to get the house looking like we would want. Please don’t feel down by this. Trust me, everyone has those moments.
I know you came to visit me at my blog and read my post ‘Letter to a pain-free Person’. I thought I would add a link for your other followers, just in case some-one actually wants to give it to some-one they know http://fibromodem.wordpress.com/2012/04/21/letter-to-a-pain-free-person/#comment-431
Great! Thanks so much.
It would be nice for those people who do not understand why their friends, who are in pain, to educate themselves about the struggles being experienced by their friend. If anything else, instead of making your friend feel guilty about not coming over because of his or her illness, then maybe going over to their house and doing something for them to ease their pain, like doing housework they can’t muster at the time or nursing them in order to help them relieve some of the pain they are experiencing would be a positive alternative and encourage the strengthening of the friendship. Any time spent with those we love should be treasured.
Hi Nikki, Thanks for your thoughts. Honestly the biggest gift you can get is simple compassion. Someone who shows they are by your side no matter what and doesn’t judge but just shows love.
Wendy, Thank you for this post. Everything that you mention goes for those of us who suffer with chronic migraines, too. No one can see it, most can’t imagine that a “headache” could really be that bad. And the same sense of letting others down (family, co-workers) because of attacks hangs over constantly.
So true. I know people who have gotten migraines and have to lay in a dark, quiet room to ride it out. One thing that is fustrating is that more people will understand the migraine if they have ever had an experience like that. They get it. It’s the people who haven’t had the experience that seem to not be able to relate or show compassion.
Truer words have never been spoken. You’ve summed up perfectly what it can be like to have an autoimmune disease. I have MS. Not many people know. I’m not ashamed; I just don’t want people to feel sorry for me or treat me differently. There’s a brochure on MS called “But you look so good” because you can’t tell that someone has MS just by looking at them (especially during the early days of the disease.) Lord knows I don’t want to look sick but when I’m having a bad day, it’s hard for me to gracefully bow out of an event, party, luncheon, etc. when people don’t know I’m sick. Thank you for posting this.
Hi Kelly, Thank you so much for your comment. Looking fine but feeling horrible has probably been the worst of it for me. You don’t want to define yourself by the illness and spend time talking about how you feel. My husband and kids get it because they are around me every day and can tell when I’m off even if I try to show my best side. My mom will look at me skeptically if I say I’m not up to something which just kills me and makes me feel like a hypochondriac. Thanks again for sharing your thoughts.
Hi Kelly, thank you for this. Like you ‘ve got MS, God and I are dealing with it. I’ll have to take look at “But you look so good”. Yes, we do look really good and healthy in the early stages (which is where I currently am) when we feel really low. People have looked at me when I’m using a wheelchair with expressions of pity on their faces. Yes I too have a health condition, look healthy enough but still feel and get exhausted for and from the smallest thing. I am forever thankful that my husband and sons understand and support me. Friends and other family members are learning, considerate and ask questions and offer support. I’m finding new limits and pushing them whenever possible and giving myself a time to leave or backing out of events with total honesty. Unfortunately for some I approach things with an ‘attitude’ of I can, am determined to and will, making sure my husband helps me, MS does payback the next day.
Yes I’ve got MS, don’t pity, talk to the person with me or talk to me like a child. My attitude comes partialy from life’s experience as an MS carer and from a disabilty sticker I’ve seen
‘Just because I’m in a wheelchair doesn’t mean you can push me around’.
Don’t be afraid to let others know that you get exhausted and why. It OPENS their eyes.
Thanks for sharing what you’ve been going through. As you can see by the response, the more people who talk about this, the more people who benefit from the stories.