Katie,
I have suffered from chronic pain related to degenerative disc disease. I have 4 herniated discs in my spine and at one level the nerve root becomes irritated when I move and cause extreme nerve pain in my leg. The result is that I can walk about 10 minutes before the pain stops me in my tracks. This has gone on for over 12 years and I have learned so so much about what I call “invisible disability”. I too, look fine from the outside. Don’t walk with a limp, cane or walker.
It is amazing that what people don’t see – then can’t believe. I gives us the additional burden of having to “explain” our situations and limitations, and often we don’t want to admit our limitations, or maybe we don’t want to complain, or ruin someone else’s day.
I have had to drastically limit my activity with this condition, because if I “walk” through the pain, the nerve gets more and more inflamed and then I am down for a couple of weeks. So I have learned how to moderate, mainly can’t walk, stand, or sit for long periods of time. This has affected everything and everyone in my life. I am married with 2 grown daughters who live in NYC. I have to choose my priorities for activity. Sometimes something is so important to me that I participate and pay the price later. Sometimes and more often, I have to turn down the invite. If I can somewhat find a way to accommodate my limitations I will do that, but the last resort which I’ve only done once, is to use a wheelchair. I hated it – felt like such a victim – was really noticed – and didn’t like that either.
Anyway, I have experienced extreme judgment on the part of others including family and friends alike. I have been accused of using my condition to avoid being with certain people. Trust me, I would much rather have a fuller active life, then avoid people I don’t like by not going places.
The key for me is : trying to find a balance between not giving up, and honoring my physical needs. The other thing I learned is that : this is my truth, no one else’s, so I get to deal with it in the way that suits me best. I learned that people’s opinions should not matter. I also learned that I am not my body, nor my illness, there is still a “whole” me regardless of my physical body. I also found it extremely important to make my loved ones understand…..not in a complaining or victim way – but in a simply factual way – this is what I can and cannot do and this is why. My family has learned to try to help moderate our activities best we can. I make sure transportation is easy, we limited certain things – like walking vs taking a cab, or traveling certain times of the day, etc. Sometimes I have to just speak up and say I can’t walk anymore. It has been a long, hard road to learn how to live with chronic pain and I am still learning. I hope some of my sharing helped and I am open to helping in anyway I can.
Peace
Pat