Choosing to disclose

Toward the beginning of this blogging journey, I wrote a post about nailing an interview for an internship (and how that was the only thing I could stand to do that day). I am now around halfway through the internship, and throughout this time I have struggled over whether to disclose that I have fibromyalgia.

There are many considerations over whether to do it or not. They are, in no particular order:

  • I am only at this internship for 16 weeks, and only work there 10h/week
  • I can’t think of what accommodations they could give me to make my work easier
  • I don’t want to come across as though I am attention-seeking or seeking sympathy or special treatment
  • I am already exhausted thinking about having to explain to them what fibromyalgia is and how it affects me and my working abilities

On the other hand, telling them might provide some context as to why sometimes at the end of the day I am almost unable to hold a conversation (because my brain is foggy) and why I take many very short walking breaks (because I am in pain from sitting too long in the chairs they have).

I am leaning toward not disclosing in this situation, but I have similar thoughts when trying to figure out whether it is appropriate to disclose my disability in other situations. Do I need to mention it on job applications? What about academic conferences? Sometimes I need to walk with a cane because my hips are agony, and sometimes I am fine — do I disclose and then use accommodations I don’t need, and then am I stuck in having to “perform” a disability I don’t have? Do I not disclose and potentially needlessly suffer?

It was a straightforward decision with members of my PhD committee and with my work supervisors. I am around this group of people long-term so it makes sense to let them know how fibromyalgia affects my work, and to request workable accommodations from my job. But more the shorter-term things, I usually don’t have the emotional energy to advocate for myself. It doesn’t feel like a good trade-off if it’s only for a short while.

My diagnosis journey

I was officially diagnosed with fibromyalgia on November 27, 2017. It was the culmination of a long semester full of frustration and self-loathing. In many ways getting the diagnosis was just the start of the journey, since now that I knew what I had, I had to figure out how to manage it. I feel that I am finally making headway on that, over a year later.

Image may contain: Rachel Luchmun, glasses and close-up

This picture was taken on the day of my diagnosis at the doctor’s office while waiting for the rheumatologist to come in. I was wearing a full face of make up and a professional-looking dress. I look at that picture and I try to find evidence of how incredibly exhausted I felt. Of course there’s really nothing there, because fibromyalgia is an invisible illness. There was really nothing wrong with me except an unrelenting fatigue, a fatigue that no amount of sleep would conquer, a fatigue that usually put me out of commission by mid-morning every day. My mind was foggy and I could hardly comprehend the work that was in front of me. The field work I had to do sapped all the energy out of me and my brain felt like it was filled with thick cotton. But there was nothing wrong with me, so I pushed and pushed and pushed through until something had to give.

Continue reading “My diagnosis journey”

On Appreciation

This Thanksgiving, social media lit up with a wide variety of gratitude posts. Our celebrations here took a slightly different angle though, focusing on appreciation instead of gratitude.

On Wednesday, Marc came home with a bouquet of flowers to show that he appreciates me. That night, we made an effort to acknowledge each others’ efforts in our relationship and reflect on what we could improve on. It was lovely to feel seen and heard.

In academia, we often must work alongside other academics for periods of time, be they through the long years of the PhD program as your committee members become the gatekeepers of your entire career, or through shorter collaborative research projects. These are all professional relationships, but when you throw something as personal as a chronic illness in the mix, it’s hard to find where the boundaries are.

Clearly, I want to communicate with my supervisors and collaborators that any delays or changes of plans are not due to a personal failing, but are because of an illness I am still trying to grapple with. However, I also acknowledge that they don’t need to be privy to the whirlwind of doctor appointments, new medications and their attending side effects, days of fatigue where even getting out of bed feels like too much, or even days when I have the energy to do work OR to come to work, but not both.

I don’t know that I feel comfortable expressing gratitude to the academic people in my life because of their understanding and patience when it comes to my illness. I mean, should I really be grateful that they are willing to work with me for not being a perfectly healthy human being all the time? Do people experience deep gratitude when they are laid up with the flu and have to delay some things or adapt to do others? Or do they just expect that the other people will be understanding?

So instead of gratitude I want to show appreciation to my collaborators and supervisors who have worked with me in changing things around because of fibromyalgia. It still takes the form of a “thank you” but it changes me from viewing fibro as something that is getting in everyone’s way, to something that gets in my way sometimes but which can be worked with.

I appreciate my academic colleagues for working with me, I appreciate my supervisors for their flexibility, and I appreciate my collaborators for their trust that I will not let them down, even if I have to work in an unorthodox way (such as by taking advantage of insomnia.)

Learning about withdrawal

Long-suffering people with fibromyalgia probably know that there are only three FDA-approved drugs to treat it, and the cheapest one is Cymbalta/duloxetine.

They may also know that Cymbalta is really terrible to come off of, and its parent company has actually been sued by patients for not properly disclosing the risks and difficulties of Cymbalta withdrawal.

The symptoms match some of what I went through when I reduced my dosage in half a month ago, and are matching what I’m going through today on Day 1 of no Cymbalta for a year.

We’ll see how this goes!

Hiking with Fibro

On Saturday, I went hiking, and I survived. It was a nice morning hike of about 4.5 miles.

I’ve always loved hiking and the outdoors, but finding time and energy to venture there definitely takes a back seat to finishing all necessary graduate school activities, making sure everything is taken care of for work, and of course the unrelenting Arizona heat when you DO end up having some free time in the summer. And that’s before you have to factor in the limitations imposed by fibromyalgia.
Despite worrying that I would not be able to finish the hike or that the exercise would trigger a flare, it was a wonderful experience, helped by the following:
  • Travel as light as you can. My wonderful boyfriend Marc suggested we take only one bag with water and snacks for the both of us, and it made a big difference not to have to carry extra weight. Especially when going uphill.
  • Get a good night’s rest prior. Make the odds in your favor by having a quiet evening and an early night before heading out to hike. Since having a good night’s sleep is hit or miss with fibromyalgia, consider rescheduling your hike if it’s a day where you just couldn’t get enough sleep.
  • Take as many breaks as you need. I was worried that Marc would get frustrated if I stopped too often, but taking breaks to catch my breath and gently stretched allowed me to go further than I thought I would be able to.
  • Listen to your body. If after catching your breath you feel you are starting to get worn out, turn back! Pushing through an upcoming bout of fibro-related tiredness is one of the best way to trigger a flare. Although, that said…
  • There is some pain you’ll just have to push through. This may be an unpopular piece of advice but hear me out. There is some underlying fibro pain that just is going to be there regardless. When we started hiking my knees started aching within half a mile, and for some reason my wrists (???) started aching too. However they were the kind of dull, fibro-just-hates-me pains, so I decided to push through and enjoy my hike anyway. And I did.
  • Enjoy the achievement. 4.5 miles is not that long for me compared to what I used to be able to do, but I managed it; I told fibro to go eff itself and had a wonderful time with Marc, enjoying the beauty of the Arizona desert. And it felt GOOD.
  • Take the rest of the day off. I had grand plans of doing grad school work in the afternoon but my brain just wasn’t into it. Running errands (groceries) for the week was almost more than I could handle. It’s best to think of hiking as something that will take your whole day or even your whole weekend, that way, you don’t end up panicking because you’ve fallen behind for school or work.
  • I want to go for another hike soon, and perhaps go longer. This particular hike was a little challenging because there was quite a bit of climbing up and down and scrambling over rocks, but it makes the achievement even better! With fibromyalgia, it’s important to make all the little victories count.

    Reclaiming a lost year: words of wisdom from my committee member

    • Grad school is HARD. For years, you are constantly asked to prove to the people around you that you are worth being there. Give yourself some credit to be doing this difficult thing even with a chronic illness.
    • Being forced to take an alternative route to achieve the same research could lead discovering new methods or at least refining existing ones. There is a place for you in academia.
    • Find your support group. Find people who can share wisdom and who can use yours. It’s even better if they’re not just grad school friends. It’s good to take a step back and see the bigger picture away from academia.

    These were the biggest takeaways from a wonderful committee member following a meeting. Story below the cut.

    Continue reading “Reclaiming a lost year: words of wisdom from my committee member”

    Figuring out a new identity: how my diagnosis was received by those around me in academia

    When I was diagnosed, I had been with Marc for about 6 months. Our relationship had gotten to a kind of weird funk because of fibro, to the point where he told me that I seemed like I just did not want to have conversations with him anymore (not true, of course — I just did not have the energy to hold in-depth conversations, being barely able to comprehend simple questions like “how was your day?”). Getting a diagnosis was both a relief and terrifying. I had an explanation for what was going on with me, but something was actually wrong with me.

    Marc’s reaction was fantastic – he asked me how he could best support me and make my life easier. Reactions from my closer friends – the ones who knew that I was struggling with a slew of symptoms that got no relief – ranged from being grateful that I finally had an answer to wondering what exactly fibromyalgia is.

    The reaction from my professors was overwhelmingly positive too. All of them told me to take time to process my new diagnosis and to take care of myself. Even though I had medical documentation that I could offer as proof, I had established a good enough relationship with them that they took me at face value and didn’t question the authenticity of my diagnosis.

    The real issues don’t stem from telling people your diagnosis — they rear up in the aftermath, when you are trying to adjust to life with fibromyalgia. 

    Continue reading “Figuring out a new identity: how my diagnosis was received by those around me in academia”

    Working Flexibility and Telecommuting

    When the main symptom of your condition is just “pain,” doing things like getting up and on to work feels impossible on bad days. Today is a bad day for me. The only way I am getting any relief from the pain in my legs is my reclining under my weighted blanket, and I am unsteady on my feet.

    I am incredibly lucky to have a supportive work environment and supervisors who allow me to work from home when needed. I filed the necessary paperwork to receive ADA (Americans with Disabilities Act) accommodations, which include a set number of hours where I am allowed to work from home, but sometimes I need to call in for my regularly scheduled office time.

    Having a supportive work environment makes all the difference. I have shown them that I will get my work done even when I am not feeling well, but I also work in a place which values taking care of yourself and not burning out due to work. I am scared that once my contract is over, I will not have such understanding supervisors.

    I can do work. I can do good work. But if my worth is measured in how well I can conform to sitting in an office for set hours, as the majority of work situations are set up, I just cannot perform. I take the moments of clarity when they come, and I can meet all deadlines, but I must do it my way.

    Catching up by making the most of insomnia

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    My desk. I may be slightly unicorn obsessed.

    This was my desk at 5:45 a.m. I’ve been up since 3 a.m. You can add “insomnia” to the list of side effects I started yesterday.

    However, I only feel regular-sleep-deprived tired instead of fibro-fog tired, so I am using the opportunity to catch up on work I did not do this weekend with the help of my Chibi Star Trek cup filled with delicious Mauritian tea.

    It’s not an ideal state of mind to delve into citizenship theory, but it’s better than nothing. I’ve learned to take the moments of clarity where I can find them.

    The frustrations and hopes of new medication

    First off, I am annoyed. I am unable to function well enough today to focus on anything, and so the pile of books I need to for my pre-dissertation work remains untouched. I also have many articles logged away in my citation manager, and it feels awful to KNOW I need to work but my mind just feels frayed, like there is a lack of connection between my two brain hemisphere. The most I could do today was finish up and submit an assignment for an online class.

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    What today looks like for me: my outstanding reading pile, trying to understand fibromyalgia, and keeping track of my medications and all their interactions.

    It’s been almost a year since my diagnosis, and while medication and my own supplementing coupled with lifestyle changes have helped some, my doctor thinks I should be able to make better progress (and I agree! Being debilitatingly tired most of the time is not fun, especially when going through a rigorous academic program).

    Continue reading “The frustrations and hopes of new medication”