Home→Forums→Health and Fitness→Living with a Chronic Illness
- This topic has 13 replies, 14 voices, and was last updated 8 years, 8 months ago by dear lee.
April 3, 2013 at 10:38 am #30246Katie Curran TaylorParticipant
Anyone? The invisible ones can be especially challenging at times… “but you don’t look sick”. I was diagnosed with an autoimmune disease almost three years ago, things have been quite difficult to balance some days. I have so much to be thankful for and am so grateful that I am as “healthy” as I am, believe me, I recognize and appreciate that…but “it’s” always there and it can be a struggle, a rollercoaster. I never ever want to be someone that uses it as an excuse in life but there are many times I have to step back and be gentle with myself, allowing a little forgiveness for my behavior or reactions or incapabilities. Good health is so precious. I wish anyone managing this (or with a loved one), peace and strength.April 3, 2013 at 11:20 am #30262Lori DescheneKeymaster
This is something that I’ve been thinking a lot about lately because my sister has interstitial cystitis (a bladder disease) and she recently got diagnosed with fibromyalgia. I know it’s really hard for her, both because of the symptoms, and because other people can’t see them. I think it’s wonderful to aim for positivity and gratitude, but like you said, it’s not always easy, and you definitely deserve to be gentle with yourself if some days are harder than others. I know I want that for my sister!April 5, 2013 at 8:29 am #31179Sheila McCannParticipant
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 : )April 5, 2013 at 11:50 am #31220JamieParticipant
Im not sure if anyone would class this as a chronic illness but it prevents me from leading a “normal” life. I have been diagnosed with SIBO and Candida. It has impacted me immensely in terms of work, relationships with friends and family and inevitably has unfortunately pushed me into isolation. The worst symptom impacting me is the brain fog, fatigue and the general unpredictability of how I feel day by day. The immense amount of setbacks and patience I have had to endure has definitely whether knowingly or unknowingly, led me to become more accepting and positive about the small things in life. When life hits you hard that’s really the only thing you can hold onto, which is the small moments of joy you experience in the amassed time you spend suffering.
I am also willing to accept my illness is at the lower end of the spectrum of severity of “invisible illness’s. In some respects that can make it worse as it is less understood and also people undermine the effects it can have on your physical/mental health even more. What I have learnt from spending £££’s on supplements is that no supplement will ever match the therapeutical impact of what the right food can give if your body is in need of it.
Im always here for anyone else suffering out there who needs someone to talk to, whether it be a completely different illness, as ultimately we all suffer in the same way.
JamieApril 10, 2013 at 4:34 pm #33713MaggieParticipant
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.May 1, 2013 at 3:48 am #35001BobParticipant
No matter how hard I have tried to put another health issue on the ‘back-burner’ and forget about it for awhile. I now have less than a week to prepare myself to make two visits to two different surgeons in one week. Less than three years ago, I was in this same situation so I took it in stride and had my entire thyroid gland removed because of carcinoma. As difficult as it was to face my illness, I was confident that this would be just a ‘one-time’ deal and I would rise up as a champion.
But today as I turn the calendar page to the month of May, reality has just slapped me in the face. In all honesty, I am becoming afraid and it is not a good feeling. The carcinoma has returned but this time it is in the throat region and I could lose my voice. I would be devastated if this happen.
Now that I have released what I have held bottled up inside, I am looking for some postive energy to flow in my direction. I just felt a tear roll down my cheek and I felt a slight tremor. Once again I will hold down my emotions and get through another day at work.
Thank you for giving me an outlet for my twinge of hidden pain that robs me of my energy and focus. — BobMay 3, 2013 at 4:58 am #35090anneParticipant
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!May 8, 2013 at 11:40 am #35266ForestQueenParticipant
I have rheumatoid arthritis, and in the four years since I was diagnosed it’s changed my whole life. I am still trying to find a balance and way forward.May 23, 2013 at 3:04 pm #36051PeteParticipant
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.”May 23, 2013 at 8:09 pm #36056SimonParticipant
I had several things hit me all at one time. Individually, they’re ‘not a huge deal’, but since they all came on at once, it feels overwhelming. I have always been overweight, a binge eater, depressed, and anxious. This all intensified when I went away for college. I gained a ton of weight and binge ate every day. When I had to leave my job a year ago, I became an emotional alcoholic. I drank about 3-4 days per week until I passed out. I was never physically dependent on it, but emotionally I was. I was lonely and bored and the alcohol helped numb those feelings.
I had to leave my job because of back problems. My L5 vertebra is fused with my sacrum, which causes me a LOT of pain. I am also morbidly obese, and that, of course, does not help the back pain. I also developed asthma and TMJ around the same time. So right now I am dealing with Bertolotti’s Syndrome (name of the back defect), obesity, TMJ, asthma, depression, generalized anxiety disorder, and binge eating disorder. I am also transgender (I don’t consider that a ‘disorder’, but some doctors do). Again, individually those things might be okay, depending on the person who is having to live with them, but when you’re dealing with them all at once, it just feels so hopeless.July 6, 2013 at 1:55 am #38043Pat MerrittParticipant
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.
PatAugust 16, 2013 at 2:12 pm #40630AnonymousInactive
I also have an invisible illness. Mine swings day to day or depending on events in my life. When I am doing well and from the outside and based upon what I’ve accomplished, people think I am normal. But to get here it took me so much effort and scarifies. It has been a battle of the last ten years. The amount of medical expenses, classes I took, the books I read, things I had to give up and fears; not many of my friends can understand how it’s like. The moment I complain, they said “be grateful of what you have, you have so much. Unless you try, nothing will change” Indeed it is correct, but the life that I have is built on very franchise ground; once I become sick, I can easily lose all together. (actually I am qualified to be on a disability and to get a guide dog.)
Since I don’t have a family, the pressure and the loneliness that I have are something others cannot easily understand. For the last ten years, no matter how sick I got, I stood up and tried again, because I believed that with my very best effort, I might be able to stabilize my illness. But it is no true. My illness is life time.
This time I can’t pick myself and stand up again. I got hurt so much on my 40th birthday. My 30 years old girlfriends took me to a dinner and innocently they talked about what they have – husband, house, kids, fully paid grad schools, nice families, professional jobs… I felt like crying whole time at the table. I don’t have any of them. I was so shocked that the ones with families and resources with good health can accomplish that much. The moment they said, “the next big decision we need to make it either to go to a PhD or have a next kid, I became totally shuttered. I didn’t tell them 3 weeks ago, I gave up going to a grad school due to my illness.
It has been 5 months since then but still I don’t feel like talking to people. I know it’s a matter of acceptance, self-compassion, rebuilding confidence, but I don’t feel confident or hopeful enough to try again. Also, my mind keeps telling me unless I can stabilize my illness, I shouldn’t get married; since it’s not fair to the guy. Tiny Buddha has been very helpful for me. Thank you.February 24, 2014 at 10:01 am #51644SuzanneParticipant
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.July 7, 2014 at 8:43 am #60337dear leeParticipant
I read all of your messages and I feel so bad. I myself has a very stupid life If you read my track record, you probably will agree too that I should just kill myself.
I am a Chinese, came to here 30 years ago with 3 kids and left a husband behind in Taiwan.
I had 3 jobs, never go out to have fun, loyal to my husband and devote all my time to my kids.
A year ago I suffer from unknown.. I can bearly walk, pain from waist down constantly, and when I went back to Taiwan, I found my husband has 3 houses paidoff and many women in the last 30 years.
I came back to here, and found myself eith not belonging any where, I am old, ugly, lonely, sick. My kids love me but they dont know what to do, I feel Iam a huge burden to them. I just want to end everything.