Basic Stuff

  • Name: Emily
  • Country: United States
  • State: New Jersey
  • City: Willingboro
  • Gender: Female
  • Age: 35
  • Education: Ph.D Degree
  • Primary Illness: Fibromyalgia (FM)
  • Diagnosis:
    • Fibromyalgia (FM)
  • Year Illness Began: 2002

Functioning Interrupted

Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 60
(Mild to moderate symptoms at rest; daily activity limitation clearly noted. Overall functioning 70%-90%. Unable to work full-time in jobs requiring physical labor, but able to work full-time in light activity if hours flexible.)

Work Interrupted

  • Former Occupation: None (was 15)
  • Job Responsibilities at Former Occupation:

    N/A - student

  • Current Occupation: Medical writer
  • Current Job Responsibilities:

    Full time job, writing up research papers, presentations, slide decks, etc. for pharmaceutical research clients

  • Current Work Status: Still working

Other Interruptions

Certified Disabled: Yes

Finances:
  • My parents or other family members have provided financial support
Education:
  • I missed significant time at primary and/or high school
Work:
  • I took on jobs with less responsibilities than I otherwise would have
Relationships:
  • I decided not to have children (or have more children)
  • I have been unable to or found it very difficult to date

Most Impactful Loss

Most impactful has been the fact that if I want to work full time I spend most of my energy doing that at the cost of having much if at all social life or romantic/dating life. I find it difficult to work full time, maintain a house, life responsibilities, and socialize.

My Story

I was always sick as a child with different kinds of infections (respiratory infections started at a very early age, asthma, ear infections, coxsackie virus, you name it). I had shingles when I was 9. At 13 I was diagnosed with an autoimmune platelet disorder called ITP. Thankfully, with treatment the ITP went into remission with only one relapse later in life so far. However, just 2 years later I developed extreme fatigue at age 15. I went to many doctors, my parents and I thinking it was related to the ITP. I was told eventually I had chronic fatigue syndrome and I seemed to have low blood pressure at that time. Because I was a teenager I was forced to go for psychological counseling. My fatigue wasn't improving and I could hardly get out of bed so I had to stop going to my normal high school classes and was only able to go to classes later in the day. I had to get tutored after school. Teachers didn't believe me and accused me of faking an illness. I lost most of who I considered my friends because they also thought I was making the whole thing up. I was very active in band (at the time was the lead trombonist in the "highest tier" band). I was forced to relinquish my spot there because band practice was first thing in the morning.

At a loss and not getting better, I went to a holistic doctor and he was the first to diagnose me with fibromyalgia based on the ACR trigger point criteria at that time. Though his treatments ultimately were off the deep end and didn't help, I finally found a good pain specialist to help me. I completed high school by only going to classes that were later in the day and working hard to make up the rest of the time - an entire week's worth of classroom time in 1 hour of tutoring by different teachers. One of my teachers launched a mini inquisition against me, accusing me of lying and saying I had mental issues, despite having filed with the school to get a 504 plan for students with disabilities. It was only after my parents threatened the sue the school for discrimination was that put to rest. Through trial and error of medications and PT I regained some function and was able to go to college and felt relatively functional. Somehow I made it through the rigors of college in a difficult major (having decided to go into science and research based on my experiences). I started Lyrica during college and quickly gained significant weight which has only contributed to my overall health issues. I decided that I wanted to go into research and to do that I needed to go to graduate school, so I entered a PhD program in Immunology. Seven years of hard work doing full time research in the lab and attending classes were a struggle. I believe my condition was progressing during this time, which wasn't helped by the fact that I was never able to find as good of a doctor to manage my condition after my first one retired. Lots of medications were tried, other types of therapies, you name it. Not much improvement.

I graduated with my PhD but had realized being in the lab was too physically taxing and too frustrating because it required so much patience which I was already using to get through my daily struggles with constant pain and fatigue. I transitioned into a career in medical writing where I can still help the medical and patient community. Throughout all of this, I found myself devoting all my energy to achieving my academic then career goals and having little else left in the tank for my "life" goals. I had great friends in grad school, but aside from dating here and there found it so hard to go out during the week or weekend to get in the dating game. I have even less energy now working full time in a difficult job and still have this same challenge. Besides, how do I explain that I am exhausted and in pain all the time and so rarely can do a whole lot to a potential partner?

At this point, my fibromyalgia has continued to progress and more symptoms have cropped up. I still have yet to find a doctor who is adequately able to help me manage this. Many I have seen have essentially said I have tried all the medications they would prescribe and there isn't a whole lot left to do. I spend so much of my life practicing self-care and doing all my routines that I need to help manage my pain and fatigue or to accommodate them - heating pads in every room, nightly stretching and stretching equipment, endless numbers of pillows because I can't ever get comfortable when sleeping. And the sad part is that I am still considering highly functional compared to a lot of people because I can work full time (I have to push myself hard to do this).

Now seeing all these folks with long COVID and realizing the true devastation and disability of these kinds of illnesses, I can only hope that more efforts are made - at public and private levels - toward better funding research and coming up with tools and therapies to improve the lives of those of us with these illnesses. While my losses have not been economic, they have been substantial. Quite a while ago, I mourned the life I had back when I was carefree and relatively healthy, but now I find myself wondering about what my life will continue to look like. Will I ever find a partner? I doubt I will have kids because I don't want to pass on any of my genetic predisposition to illnesses and I also don't feel I would have the energy needed to take care of them. I feel that loss keenly when I see my friends with their kids. Having lived more than 2/3 of my life with this illness, I can tell you the cost is real even if it can't be measured in lost wages in my case. I suspect if you added up all the money I or my parents spent on various medical appointments, treatments, devices, supplements, pillows, etc. (all in the hope that something might help), it would be a shocking number.

One last note: I feel grateful that I was able to attain my PhD in immunology because having that intimate understanding of science, medicine, research, and pharmaceutical processes, has only benefitted me. In these diseases, patients have to be their own advocates and bring knowledge to their providers, and when you don't have the basis with which to do that, you are even more on your own and adrift.



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