Question of the Week: 24 - 30 September

Yes, i not only have an 'invisible illness', but it is the type of illness that makes ME invisible, too~!

i am speaking of Agoraphobia, one of the most invisible disabilities, because we are so often almost completely isolated and hidden at home. I understand that, generally speaking, Agoraphobia is lumped in with other Anxiety Disorders. but that does not seem to do it justice. like other phobias, this is more than just an agitation, it is paralytic. Having experienced GAD, Phobias, PTSD and OCD, i can say that the most crippling of those is Agoraphobia. it is like a prison sentence without a trial, solitary confinement. if it is severe enough, and lasts long enough without relief, agoraphobia can actually cause some types of brain damage. humans are social creatures, and without that connection to others and the feedback and opportunities to exercise ourselves, we become stunted and withered - emotionally and cognitively.

i really hope that this message will cause some to join in the ongoing efforts to organized an ongoing Agoraphobia Discussion, and perhaps even a Check-In thread.

@SoulfullyAButterfly

I have an invisible illness. Osteoarthritis in all my joints and spine.

@SoulfullyAButterfly I am not sure if I should be breaking this into different sections because of the questions, but I will combine the next two questions.

Along with Osteoarthritis I have Central Sleep Apnea, and have found out a few months ago I have hypertension along with arthrosclerosis, and Mitral Valve disease. Central Sleep Apnea is different than Obstructive Sleep Apnea which is the common one. The form I have is: my brain and lungs stop communicating and I stop breathing. This happens up to 50 times a night. I have tried and tried to no avail to get used to wearing a full face cpap mask and I cannot. I've tried so many different masks that I've given up trying. So I don't use the cpap machine.

My experience having Osteoarthritis has been absolutley horrible. Nobody believes that at age 56 I have enough pain and down days that I cannot work. I was approved for SSDI at age 38. I tried going back to work in different work fields three different times. By the 3rd month it was TOO much, I would have to leave my job. At least I tried. I have scoliosis and the curve has gotten worse, but the positive thing about that is now people can see how crooked I am once I stand. If you spoke with or saw me sitting down, you would not think I had anything wrong with me, UNTIL I stand, then it is very apparant. I have been judged badly, back-stabbed, not believed over the years of having this illness. Nobody can see all the calcium growths on my joints, nor can they see the cartilidge, tendons breaking down. My knees are bone on bone but I am too young for any knee replacements I've been told. So I just add it to my suffering. I've had a 3 level spinal fusion with cages, rods, pins and screws. It did nothing to stop my pain. I had a laminectomy done at the same time which pretty much cures Spinal Stenosis, that DID help the sciatica I was having in my left leg down to my toes. My left foot would cramp right up in my shoe and I would have to stop walking to release the nerve. That doesn't happen anymore. Had the fusion done 16 years ago. I wouldn't recommend a fusion only is very specific cases, like maybe a younger person straightening a bad scoliosis curve. If I had the chance to do it again, I would not.

What would I like to see changed. I would like for people to just believe us when we say we are in pain. Especially when all the medical imaging shows that there is damage. Medical evidence shows it, yet people think you are making it up. OR they think that because you are having a good day today that you are getting better. That happened to me in the past year!! Just because I can do something today does not mean I can do it tomorrow, nor does it mean that I am getting better. I will never get better, only worse.

I would also like others to not tell us about supplements, or this or that will help us. I appreciate that you care, but there is nothing that I have not tried. I've had this illness since I was 24. At age 24 I was told that I would be in a wheelchair by age 50. Thank the Lord that I am not in one. I do use a cane, and rolling walkers inside and out. I wish that there were a cure for the Osteo. There has to be something that can stop all the overgrowth and inflammation. But there isn't. YET. I hope that someday nobody will ever suffer so badly with this. It steals your energy, your good attitude, your life. If you let it. I keep fighting, I keep getting up everyday and doing what I can, which Isn't much. But I work at household chores everday, slowly. I have no help because my health doesn't require a nurse. So I cannot get help with my household work which is SO VERY PAINFUL. There are things I would like to be able to do but cannot, so they stay dirty. I do the very best I can, but I am handicapped. I wish there were programs to help people in my situtation and I know there must be thousands. In my state there is a program called Homemaker services, but the funding is so slim that I have been on the waiting list for 3 years now, and still no help.

Thanks for reading my post if you've made it this far! LOL Have the best day you can!!!

🦋 Do you or somebody you know, have an Invisible Illness?

The two closest people to me seem to have an invisible illness. Doctors don't know what is wrong, I am not entirely sure either. Both my daughter and my GF have a whole assortment of various things wrong with them.

🦋 What has your experience with an Invisible Illness been like?

With my daughter, it has been a learning experience. I have learned a lot about what is wrong with her, but not enough to be of any help. She can't eat dairy, anything that has grease or a lot of oil, a whole bunch of stuff. With my GF, it is similar, but different. She is unable to eat almost anything, no dairy, no gluten, no sweeteners of any kind, no bread products, I am still unsure of alll the things she can't eat. We went out for dinner last night, the only thing she could eat was a salad, and she had to pick things out of that.

🦋 How would you want your experience with an Invisible Illness to change?

EASY. I want them to go away. To not bother these people ever again. To allow them to eat regular food. What a concept.

@SoulfullyAButterfly

🦋 Do you or somebody you know, have an Invisible Illness? Well bipolar disorder a friend has but it is not totally invisible. Cancer can be invisible too.

🦋 What has your experience with an Invisible Illness been like? It seems difficult to know unless you know a person well that they are really suffering.

🦋 How would you want your experience with an Invisible Illness to change? I would like to see more support for people with invisible illnesses. Depression is something no one should have to face alone.

Some of my illnesses are invisible, and some of them are invisible most of the time.

Asthma symptoms are fairly invisible, although during an attack someone can see me coughing and gasping. My nasal polyps are invisible to anyone without a scope. Hereditary angioedema symptoms can be very visible and disfiguring but it all depends on the attack location. Most of my attacks are invisible without a scope. Allergies can be invisible, although their symptoms (flushed face, rashes, swelling) can be visible too. I suspect I have at least one other invisible illness that is still undiagnosed.

My experiences with invisible illnesses have been frustrating. It took decades for hereditary angioedema to be diagnosed I was extremely ill with it, having attacks which I should have been getting emergency treatment for and being told I was just stressed, go for a walk. Even with my diagnosis I still struggle to get proper attack treatment when not doing it outside of a hospital. Just being appropriately triaged can be a challenge. While not as serious my nasal polyps also took a very long time to be diagnosed, although I can't as easily state when they would have first appeared, I know I have had hereditary angioedema my entire life. Asthma has been less challenging, although at times it has been brushed off by others and there have been times where it has contributed to something like pneumonia that I self diagnosed based on my previous experiences with pneuomonia, as a doctor wouldn't run any tests nor treat it. I do mostly rely on self-treament which at least gives me control and independence.

I wish my illnesses could be diagnosed more easily. I also would love to see better treatments and more easily to administer without side effects. Better awareness of the rare stuff would also be really beneficial.

A lot of physical disabilities are invisible to many others. They are noticeable until someone gets to know me or spends much time with me. I have chronic fatigue. I would just like a break once in awhile, more compassion, free professional respite cater for and elderly parent, and more respect for how difficult it can be to navigate bureaucracy, life, academic when I dont often feel well, I'm exhausted and sleep deprived. Also I wish professional. In general that I required in general to get assistance where more knoweledavle and understanding about challenges for people like me with invisible disabilities.@SoulfullyAButterfly