Several doctors cautioned me against opting for long-term disability. Their concern was that I would become bored and depressed. I won’t say I didn’t have moments; but, in general, it was the best decision for me.
Yes, I was sad to leave a job for which I’d trained and struggled to obtain. I grieved my loss of identity, and I was fearful of my financial situation. The lack of interaction with friends and co-workers also was a huge loss. Without family in the city where I lived, it was difficult to establish a new social network. Most people who stayed at home all day were retired. I was only 51.
But (and this is a very big BUT) the positives far outweighed the negatives for me. My aching, exhausted body was so relieved to be free from the stress of my corporate finance job that I did little other than sleep for the entire first month. In addition, I was free to take the quantity of pain medication required to control my pain without worry that I’d be too sleepy to concentrate.
In time, I began participating in therapeutic activities that had been too strenuous or time-consuming during my lengthy workdays or less necessary than the household chores I had to accomplish on weekends. The first thing I did was resume swimming. When my symptoms were under control, I swam regularly on my way home from work. It was one of the first things to go when my symptoms worsened and fatigue became overwhelming. Now, I had the luxury of the entire day. I could swim when my energy level was highest – between 10 a.m. and 2 p.m. It was helpful for my body, but it didn’t fulfill my need for social interaction. There were few people in the pool at that time of day.
Then I added yoga to my life. I experimented with schools or types at first. Ashtanga yoga was too physically demanding, and I ruled out Bikram yoga because of the heat involved. I finally found a Kripalu yoga class, and there I stayed. This particular practice is an interaction of body, mind and energy. I found it to be stress-relieving and pain-reducing, as well as a source of inner peace. One word of caution here if you’re a newcomer to yoga: Avoid classes at gyms. They tend to be workout-oriented rather than emphasizing stretching and flexibility (the two most helpful benefits for FM sufferers).
Once I’d settled into a comfortable routine that included frequent exercise, a healthy diet and plenty of rest breaks during the day, I felt the need to be productive. That’s when I began writing.
My desire to help others prompted me to record and publish my unique experiences with FM in the hopes that I could prevent other patients from making the same mistakes I had made. Writing a book was a huge goal and a painful, lengthy process. I could write for only short periods of time. Otherwise, my neck would cry, my arms would ache, and I would be bedridden for days. I learned to take frequent breaks, but each one interrupted my train of thought. So the book, Tender Points: A Fibromyalgia Memoir, took nearly 5 years to write.
Do I recommend long-term disability for everyone with fibromyalgia symptoms? Absolutely not! No two cases of fibromyalgia or financial situations are the same. It’s a life-changing decision that requires extensive research and knowledgeable advice to make a reasonable choice for yourself. Please do not make the decision lightly or quickly, but do not discount it, either. Perhaps for you, as for me, long-term disability may change your life for the better.
***
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
This is so me! I WAS an Occupational Therapist, which was very hard on my body. I am still waiting for my trial for disability, but I feel it was the right choice due to my failing health. I also have RH and Lupus. I am only 48, and am really missing my job and the interactions with others. I need to fi d my place in the disability community yet. I know I can overcome the loneliness, just need to find my way.
Love Christine’s article! Sue, I also have Lupus, FM, and Lyme. I live in pain every day and unfortunately, I’ve lost the ability to assess when my pain is a Lupus/Lyme flare-up or FM. I WAS a nurse, I’m 60, left my last position in 2010, and yes I was definitely stupid to wait to apply for SS Disability. After 2 years of working with an attorney, I had a hearing Aug 31st and am now in the waiting process to hear if I’ve been denied or approved for Disability income. We were doing ok on my husbands salary, but now I need help with cleaning the house, grocery shopping, anything more physical than folding laundry. Praying that I get approved so my grown kids can just visit and so that my husband doesn’t have to do so much extra at the end of his workday. I expected some loneliness, as you mentioned, and since I can’t commit to much volunteer work I thought I’d be extra lonely. It turns out that I’m doing some simple hobbies that I missed doing when I worked, and on a good day, I enjoy cooking and and try to make enough to cover the “bad” days. I spend time on Skype with my grandkids. Read, watch movies on rainy days, write letters and cards, cross stitch and quilt gifts. I try to incorporate visiting friends/family on days I have dr appointments which makes the day turn out more positive. Long story short…I should have applied for SS Disability sooner. I’m sure new discoveries will pop up in the future, and I feel really good (mentally) that I have the time to explore. If you’re up to a little advice…don’t try to fill your empty time with people, especially people who don’t get your pain, it’s disappointing. Learn to do something that’s been on the backburner for awhile. It can bring you lots of joy! Best of everything with your disability hearing!!
Thankyou Christine for raising this issue. Like you I grieved the loss of my job but my “resignation” from employment wasn’t a well thought out process – I was physically too ill to work. I got very angry. It was not a happy transition. However, I woke up one day and realised being angry was such a negative influence and took so much out of me – it was time to admit I needed help – so off to Centerlink I slunk – and if I didn’t know anger before – I certainly felt it now. I had financially supported myself for 9mths – thinking I would get better soon. When I had used most of my savings Centerlink’s treatment of me – their bullying and intimidation was at a time when I was so vulnerable, so ill, so alone and they didn’t care – not their problem. I had to appeal to my Federal MP for help. Centerlink did not like the Minister for Human Services asking to please explain & get it sorted. I was placed on the least of all benefits –
Sickness Allowance – and denied the DSP.
I have wrangled with Centerlink for only 4 years now and our relationship has not improved. Just recently due to a “computer glich” I was cut of from any benefits for 2 mths. No amount of begging or reasoning produced results – so back to my Federal MP. Ta Da!!! All fixed. What I’m trying to explain in my very convoluted way – is that the DSP is not a “given” and any claim for DSP brings stress and hardship and can cause great distress. It shouldn’t require an email to your Federal MP – but if that’s what it takes to ensure the Centerlink do the job they are supposed to – then do whatever is necessary to access government support payments when your body can no longer cope with your job.
It’s not easy leaving employment – but many of us had no choice.
You are no less valuable, no less a person because you are too ill to work &
Don’t let Centerlink bully belittle & intimidate you into thinking you are unworthy. My very best wishes to anyone who has to make the transition to “unemployment due to medical reasons”. 🌺
I am 60 years old and have been dealing with FM and CFS since I was about 30. I applied for disability at about age 36 because I couldn’t work at any job outside the home. I was doing medical transcribing at the time and was beginning to struggle with the daily computer use. I was sent to “one of their doctors” for evaluation. After a physical exam that had me crying, he had me squat. My knees were long shot due to a separate issue and could not stand back up. He left the room and I had to crawl to a chair to get up. The evaluation came back that I was “able to the jobs for which I had training” and was denied. I waited 15 years before I applied again. By then, all my work history was too old.
If you need too and are able, please apply for any assistance you can get. I have now lost the ability to keep my house respectfully clean and cannot afford to hire help. Needless to say, hubby is not thrilled about this decline, but does understand.
Reba:
Yours is a familiar story. So many people with FM have been treated badly by our system. If only the decision makers could walk in our shoes for a day, the outcome would be much different.
Amen to that!
My husband forced me to file for disability due to my work descent that was caused from FM. Advice that worked for me: If you file for disability you are allowed to request your entire file on CD Disc which shows every document Social Security has on your case. Also it is better to go to your hearings without a Lawyer. Judges respect you more if you represent yourself and the people at Social Security are helpful.
It is important to note that each disability case is very different just as each case of fibromyalgia is different. A lot depends on the people who are involved, i.e. your rheumatologist, the government workers who review your case, the administrative law judge who hears your case, etc. It’s a difficult process at best.
Hi Judy
I hear the opposite. People say you should hire an attorney since winning a fibromyalgis case is very difficult. At least here in Florida.
Hi Bonnie, I am in Nevada and I had 2 hearings. I hired a Lawyer the first time and he made a fool out of me. I should have terminated him in front of the Judge. The second hearing I went alone and got approved and a check within 2 weeks! Every experience is different. I just thought I would mention, you have a right to request a CD of your case and ALL the details SS has on your case are recorded including what their doctors have said about you and you have a right to refute them. Some people don’t have the confidence to stand alone, but after my hearing with the incompetent Lawyer I felt I had no other choice and it worked out! If you happen to find a “good Lawyer”, it would make the footwork easier though. Just wanted to get the message out you don’t have to hire a Lawyer there are other options available in case you end up with a Bozo like I did…
I am so glad I found this site! Each story I can relate to, as far as the disabling effects of this disease and the challenges to find medications and doctors that are willing to help! I, too had a very successful business and had to give it up, due to the physical pains I suffered. Does anyone think we want to apply for help to exist in this world? I was making good money and was very happy living an active life. When you look good on the outside, everyone assumes you are feeling well on the inside, too. Not the case with fibro. Attacks of joints, stomach, bowels,stabbing pains any time of the day or night, sleeping problems, weight issues, spine spasms, depression, mental fog——-I could go on and on. I used to be so outgoing, now I am a recluse. Please help us with this disease!
My thoughts exactly! I loved working hard and playing different sports. FM began and eventually ended all that, now life is hard, it’s a daily struggle and it’s frustrating to looks so healthy while enduring so much pain and exhaustion! My husband died in 2011 so I struggle financially and I’ve had people say “why don’t you just go get a job?” People do not understand,the only way they would understand is if they “Got IT” FM, that is…
I can so relate to your comment. I’ve been a “good soldier” for the past 10 years. Fighting the ongoing and relentless chronic pain of FMLA, OA, and major depression. I worked as an OR assistant on a 12 hour night shift. My life was barely sustainable. Work, pain, tears, anger, intermittent leave. In 6 years I haven’t engaged in social activities or left my home other than to go to work in tremendous pain, come home and collapse into bed till the next work day. Yesterday I finally made (along with my doctors) the decision to apply for disability and see a social worker this Monday.
It will be difficult to go from earning a good paycheck to monthly disability benefits
I’m 57 years old and although I have an ongoing battle ahead of me, deep down I feel a sense of relief. I am so over putting on a mask and pretending to the outside world I’m a bad ass fighter. I just want some semblance of joy and peace. I pray and wish you all the same.