My feelings are that, just so so. I ask myself, have I done all I can do? Things have not went as planned. I believe I have lost faith in the people of my state of Delaware. No matter how much I advocate for Sarcoidosis and its affects on its patient’s that battle it everyday, no one seems to care more than me. I guess because I am literally fighting for my life. Each year my body gets weaker and weaker as more areas of my body are attacked. Especially this year. So I ask people to help with the various tasks to get the word out and to get people registered for the 5k event this weekend coming. My count is menial. I receive updates daily from FSR and they never change. I have invited our States dignitaries and also my medical teams. Invites sent in every means available. No responses except from one, Senator John Carpenter. His team told me that he couldn’t make the event but he would make time for me as soon as everything settled down in D.C. I appreciated that. At least he took the time to reach out. Usually I received a proclamation by this time. None… I am so disappointed in my State. They turn out for cancer all the time. They just had a huge event for autism. I applaud both of those turn outs, but okay my cause matters as well and it is affecting hundreds of people of all ages and nationalities here in this State. We need support. Sarcoidosis is a rare disease that is unknown, incurable, debilitating, underfunded and sometimes deadly. So am I wrong for losing faith? Having invested monies that I don’t truly have to get the word out so that we Sarkies can get help raising awareness and hopefully acquiring donations towards finding a cure; disappointment and hurt is what I feel. Like no one cares if I lived or died.
I know it has been a while since I have blogged, but you know with Sarcoidosis you never know how you will feel one day or the next. Well the last week has truly been HELL for me. I was in so much pain that I couldn’t get out of bed. Had trouble eating and sleeping because of the pain. This is why spreading awareness about this disease is so very important to me. I want people to understand, this disease just doesn’t affect the patient alone. It affects the whole family. Having to see my family, especially my baby girl worry and fret over me was horrible. I truly hate having to put them through this.
I was looking through some old documents that I had on Sarcoidosis and I found one of my favorites that I would like to share with you. Feel free to comment. I love hearing from all of you. Supporting each other is what helps us all get through this. ^+^
Looking Good but not Feeling Fine
‘Hidden illnesses’ affect more than your health
By E’Louise Ondash
Health Scout Reporter
THURSDAY, April 12 (HealthScout) —
Sherry M. is not surprised by the occasional disgusted glance she gets after pulling her car into a handicapped parking place. After all, she looks perfectly healthy.
But because Sherry had polio as a teen-ager, today she has a weak left leg, can’t raise her arms above her shoulders and endures chronic back pain because of the lack of strength in her abdominal muscles. She finds it difficult to move quickly, has little endurance and can’t carry packages of any weight.
“I get stares and looks,” says the 65-year-old San Diego resident, who asked that her full name not be used. “No one has ever commented to me, but their looks say, ‘Why are you parking there?’ ”
And she’s not alone.
Millions of Americans have what some call “invisible disabilities” or “hidden illnesses.” They look well, but they deal with serious physical problems — everything from post-polio syndrome, lupus and hepatitis to diabetes, Crohn’s disease and irritable bowel syndrome.
Still others contend with so-called “elusive illnesses” like chronic fatigue syndrome, fibromyalgia and chronic pain. Medical experts say these are particularly difficult to live with because many people — both doctors and the public alike — aren’t convinced that all elusive illnesses are true illnesses.
“These people endure not only the suspicions of friends, family and co-workers, but their own self-inflicted doubts about whether their condition is real,” says Carol Sveilich, a former university counselor who gave up her job because of Crohn’s disease and fibromyalgia.
“Sometimes they wish that they actually appeared disabled so that people would take their illness and limitations seriously,” Sveilich says. “Others try to appear normal and healthy so they blend in, but this impacts their symptoms, stamina and pain.”
Sveilich, who led a support group for nine years for people with Crohn’s disease and ulcerative colitis, both potentially life-threatening, says she’s writing a book about people who suffer from invisible illnesses. Their portraits and narratives, she says, will reveal that looking “just fine” does not always mean a person is well.
“People in my support groups used to say that they were the healthiest-looking bunch of sick people in town,” Sveilich says. “I want my book to reveal the special challenges faced by people with invisible illnesses.”
Social support is crucial
One of those challenges is a lack of social support, says San Diego psychologist Michael Wrobel, who counsels people with hidden or elusive illnesses.
“They don’t get the social support that someone with an obvious illness gets,” Wrobel says. “The person with an obvious disability learns to navigate through social situations because they get other people’s reaction to them. They don’t feel so alone, and the support they get ends up being healing as well.”
Those with hidden illnesses, though, can find it difficult to reach out because they often are accused of malingering or having a bad attitude, he says.
“Their friends and family say that it’s all in your head, or they want to know what you did to cause the illness,” Wrobel says. “That’s a lot of stress, and if it continues, it can have an effect on your immune system. Your muscles tense, and this makes the pain worse. It’s becomes a vicious cycle.”
Most people are more than eager to help someone with an obvious disability, Sveilich adds, “but there is a reluctance to make accommodations for people who have hidden conditions, who often suffer a great sense of loss for all of the things they can’t accomplish because of their illness.”
That’s the case for Judy S., who mourns for the life and friends she once had. She, too, asked that her identity be protected.
“Ten years after getting mono, I’m still ill,” says the 57-year-old former bank executive who lives in Valley Center, Calif. “I have chronic fatigue syndrome, low blood pressure problems and have to wear sunglasses all the time because the light hurts my eyes. I’ve lost most of my old friends because our schedules can’t ever be the same. I need a lot more rest now.”
“It’s very frustrating because many people think chronic fatigue syndrome is a psychological disease, but it’s not,” Judy says.
‘I’ve had to learn to say, no’
Sherry, the San Diego woman living with the effects of childhood polio, suffers similar frustrations.
It’s difficult, she says, to always have to explain why she can’t do a lot of things that people assume she can. She earned a master’s degree and raised three children despite her physical limitations, but the retired medical social worker says she has to remind even her peers in her polio support group that she can’t take on the work of an able-bodied person.
They forget, she says, because she’s not in a wheelchair.
“I’ve had to learn how to pace my energy and time and say ‘no,’ ” Sherry says. “They don’t realize how much energy it takes to live daily life.”
Nancy T., a 37-year-old Idaho psychologist, also has been sidelined from her active life since she was diagnosed with Crohn’s disease in 1997.
“Sometimes keeping a positive attitude is harder than dealing with the physical part of the disease,” says Nancy, who asked for anonymity. “I used to be a very active person, but the disease changed my life. I’m coming to terms with my limitations, but it’s the biggest challenge of my life.”
Still, she’s on the right track, according to psychologist Wrobel.
“People with hidden illnesses must integrate them into their lives, and they will have much less pain,” Wrobel says.
“They also need three things: control over their lives; predictability, which means you can adjust to your condition better; and an outlet that permits them to talk about their illnesses, like a support group,” he says. “If they don’t have this, they’ll feel more and more isolated.”
What To Do
If you have an invisible or elusive illness, you’d be well-served, Sveilich adds, to:
- Realize you’re not alone. Millions are living with hidden illnesses.
- Believe in yourself, even if others question your illness.
- Remember that you’re not responsible for other people’s reactions.
- Speak matter-of-factly whenever you talk about your illness.
- Educate yourself about your illness, and ask the right questions.
- Join a support group.
- Learn to honor your limitations and to say no — the first step toward taking care of your needs.
- See flare-ups as challenges, not crises, and accept hardships and setbacks as part of your condition.
- Embrace the Buddhist notion that pain and suffering are part of being human, and maintain hope that tomorrow will be easier.
- Realize that your invisible illness makes you stronger and more resilient in ways you have yet to discover.
Copyright © 2001 Rx Remedy, Inc.
Last updated 4/11/2001 12:01:00 PM