Hi Katie and Lori,

I’m familiar with autoimmune diseases.  My mom has parkinsons and has been a challenge for her and my family.  My daughter has food allergies which falls under the umbrella term autoimmunity.    I wish I could say that people are always sensitive to their  struggles but that is not always the case.  Developing a thick skin, positivity, support where you can find it and self love are a must.  Get through the tough days and embrace the good days.   Support where you can find it is key.  Take care : )

I struggle with my chronic migraines and have for almost ten years. The misunderstandings that come along with migraines are very frustrating. I find it difficult to be patient with others when they question my current treatment.

In addition to the outside struggles, it’s difficult to continue my daily life when suffering from a migraine. When I was initially working towards a treatment plan, years ago, I was forced onto short term disability. I was a shell of try former vibrant self and worried I’d never be able to properly mother my kids again. Just thinking back on those months fill me with sadness.

I’m very fortunate to have found a doctor to work with me on an ongoing basis to keep my migraines controlled. Unless I shared, you wouldn’t even know I had a condition!

If I can ever be of support to anyone, please don’t hesitate.  Whether it’s you or your loved one who is struggling with finding a treatment plan and illness management style that will work for them, we all support.

I find it hard to describe as an illness but it isn’t something that will ever go away and will probably get worse, but after knee surgery about 12 years ago, which wasn’t particularly successful I now have permanent Chrondromalacia in both knees which varies daily between a minor nuisance and virtually crawling up the stairs and trying not to show to others just how ghastly stairs are in my facial expressions!

Another was having a large thymoma removed just over 2 years ago, which was borderline cancerous, fortunately fully removed but due to my age, there is no guarantee it won’t come back. Its taken a long time to ‘accept’ my situation but I know I just have to live with it as there is not much I can do other than have regular check up’s for the rest of my life. It wasn’t really symptomatic until it was caused me to end up in A&E unable to breathe, which slightly terrifies me it could happen again and I might not be so lucky.

I also suffer with irritable bowel which varies in its severity but am thankful for now is mostly behaving itself!

I think I’ve had maybe three pain-free days in the last decade. Two dozen surgeries, hundreds of dollars of medications a month, and so many dr appts, I’m recognized by name at the hospital and clinic.

The most impacting thing I’ve ever read regarding this is “you are NOT your disease.”

I’m not a victim, I don’t have to be limited (beyond the obvious–you won’t see me running marathons or competing in the Ultimate Fighting Championship…), and after years of defining myself as “I have _______,” I say “I’m a Dad, a husband, a friend, oh and I have this medical condition that is kind of a pain in the A** sometimes.”

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

Hello everyone. I am new here and am so grateful that I found this site. I helps me enormously in day to day life. I have been dealing with chronic illness for 18 years now, since age 18. My health seems to get worse year after year. However, there is a blessing that has come from this. I feel my spirit is getting stronger day by day. I feel as though the illness has awoken something inside of me and I now see life in a different light. I see God in all things and am able most days to feel very grateful for all that I do have. I am blessed in many ways.
I do find it hard to not let the illness become who I am. I have so many symptoms as most of my body systems are affected and that alone can pull me down. I have to fight to not go into the pity party, or question the “why” of it all for very long. I am struggling with the isolation of it all as well. It seems that my healthy friends (what ones I have left) don’t understand the chronic illness issues and now I feel that they don’t understand the side of me that has “awoken” to the spiritual side of life. I feel like of like a misfit right now. When I start talking about God or how nature makes me feel centered, or meditation, they look at me like I am crazy..lol.
Anyway, I just wanted to say “Hi” and that I am grateful for this stie and the ability to meet new people that do understand how I feel and the opportunity to learn and share with others.