Fibromyalgia warrior, Whitney Darling, suffers from Fibromyalgia. Whitney has added her face and story to Faces & Stories of Fibromyalgia. I am so grateful that Whitney has shared this, as each story told raises awareness and helps fellow sufferers.
You can connect with Whitney Darling by following her on Instagram.
My story about my invisible disability starts off a little different than most. I have two invisible disabilities with a possible third one that is undiagnosed. The first illness that I was diagnosed with was at the age of three. See I have a hereditary condition called Charcot Marie Tooth disease. CMT is the most inherited peripheral neuropathy disease in the world. It is a progressive disease that can cause loss of normal functions in your feet/legs and hands/arms. Because it is a nerve disorder it can also affect other nerve functions in your body as your nerves are not working properly and some die off as you get older.
I was diagnosed during an annual visit that my mother and grandmother did with the local MDA doctors. When the doctor took one look at the way I walked, they told my mother that I had CMT too. That really began the journey. When I was younger it didn’t affect me too much. I couldn’t run like other kids or play sports which was fine with me. But as I got older the effects got worse. In my mid-20’s things started to change.
I began noticing that my hands were bothering me more and more. After a long day at work I would come home, and my hands hurt so much that I could barely keep it together. I also noticed that I would get leg cramps and leg pain more often. I knew that meant that the disease was progressing. I began to see a neurologist locally, but they didn’t want to start me on any medication just yet. I got compression gloves which helped a little bit and tried my best to take it easy when I got home from work.
In 2015 my mother and I went to a clinic that specialized in CMT in Iowa. We spent a whole day there getting the tests done, meeting with a variety of specialist and speaking to CMT experts. The doctor that I saw was amazing, she tested me to my limits and when I told her about the hand pain, she said okay you need to start taking some medication. I was hesitant, as I had read some bad reviews on said medication but figured what’s the worst that could happen. I started on gabapentin and that was a game changer for me. My hand pain didn’t go away completely, but it made it a lot more manageable. I was now able to work the whole day, come home and still make dinner, and not skip a beat. It also helped with some of the leg pain. They recommended that I kept up with exercising and watch what I ate, as that can really affect people with CMT.
Years went by and in 2018 just when I turned 30, I started to feel odd, not myself and like something wasn’t right with my health again. My first thought was that my CMT was progressing yet again and that I may have to try different med’s. After working with my local neurologist and trying several different medications that did not work and caused serious side effects, I just kept up with what I was already taking. I still didn’t feel quite right, but I pushed through it.
For me, like many others, the holidays are an extremely difficult time. I have a split family so its very hard not only because the weekends are booked, but also holidays are busy and usually non-stop going from one place to another. During the last three months of 2018 I was feeling absolutely terrible, I was dizzy all of the time, I was extremely fatigued, I was depressed, I had additional pain everywhere in my body, I had IBS symptoms, and had bouts where I didn’t want to eat anything. I also had a very serious fainting episode which knocked me out for a few weeks.
Something was seriously not right. I took matters into my own hands and worked with my local doctors to try and figure out what was wrong with me. I went through a ton of testing for several different issues and disorders, but they all came back negative and everyone said that I was fine. But I clearly wasn’t.
Now I’m a huge believer in you being your own advocate, so I researched every night about what my symptoms could mean. Finally, I came upon Fibromyalgia. I asked my neurologist about it and he recommended that I see a specialist at my local hospital. I booked the appointment and within about ½ an hour, I was diagnosed with Fibromyalgia. Finally, an answer; but now more medication. They gave me a muscle relaxer for the very bad days and suggested that I should try to take more breaks, not get stressed out, continue to take my current med’s, exercise, and eat right. I always laugh when they say don’t get stressed out because life is stress.
I was relieved to finally have a name and after more and more research, following support groups, and everything in between, I was 100% sure that Fibromyalgia was what I had. I even found out many people with CMT end up getting Fibro due to the neurological components. I also found out that Fibromyalgia can be genetic, and it turned out that I have cousins who have it.
As of today, I’ve been struggling with a bad flare that has been going on since October of 2019. I had a series of very stressful events that caused the flare. And it hasn’t stopped, it has been causing some intense pain, body wide, fatigue, IBS, stomach pain, and everything else in between. One of worst parts about this flare is the depression and anxiety. I’ve struggled with depression from time to time, but it hasn’t been this bad for years. The holidays were stressful, work is stressful, home life is stressful, and I could cry at the drop of a hat because I am tired, worn down, exhausted mentally and physically, and just don’t want to do anything but lay on the couch.
Another bad part is the severe stomach issues that continue to be undiagnosed. Since October I’ve suffered from chronic pain in my stomach, constipation/diarrhea, cramps, no appetite, weight loss and nausea. I was worried so I reached out to a doctor and after a colonoscopy and endoscopy, they found nothing. So back to the drawing board and as of right now I’m managing it. I don’t currently have the financial means for further testing, so I must just deal with it daily. I’ve noticed the foods that give me issues.
My illness has a hard grasp on me even today. I’m trying my best to push through, I’m seeing a therapist weekly, I’m trying to figure out ways to stay happy, take some time to myself, and enjoy the parts of my life that I can. But it’s still a struggle every single day.
Unfortunately, people do not understand the struggle of living a daily life with chronic pain. This has plagued me in my working life. I currently work full time and there is no way for me to go part time, due to my financial situation. Work during the fourth quarter and first quarter are always stressful. This year the stress is extremely bad and it has taken a lot out of me. Because of this, my mood at work isn’t always great. I can’t keep a smile on my face and my boss even started to notice a difference in my personality. After they spoke with me about their concerns, I started to think about ways that I could make my job easier for me.
A way to make my job a little bit easier was to add an additional work from home day. I was recently allowed to work from home 2 days a week which will help immensely. I’m very lucky that most of our work force is virtual so it was an easy decision. I’m a hard worker and do my job no matter how I feel. I never call in; I’m prompt and I don’t take advantage of the flexibility that I was allowed. If you work and are in need of accommodations, I would recommend doing some research on the ADA and looking at a website called https://askjan.org/ which would be a great place to start.
Now I want to also say that in my life I’ve been very lucky and sometimes you have to try and focus on that. I have some hobbies that I really enjoy which include being a freelance model, where I get to make beautiful art around the surrounding areas of Milwaukee. Creating costumes and accessories for Cosplay, which I do every year, and celebrating my favorite holiday, Halloween, which I always go all out for. I’m so lucky to have a wonderful husband and 4 feisty cats that keep me on my toes. I have a truly amazing family which includes my mother who has always been my rock and mentor in life. I have a fabulous group of friends, some of them have invisible diseases too, and it’s great to know that they are there for you no matter what.
Who knows what will happen in the future? Quite frankly, sometimes it’s hard to be optimistic, but I’m trying my best to think up ways to keep a career, and also take care of myself. I’m in the middle of doing research to be more involved with those with invisible illnesses. I’ve found some great people to follow, great boards to be a part of, and I’m really trying to expand my horizons on my disease and help others in return. My hope is to find something/somewhere that I can be a part of. My goal is to help others in whatever way possible. I know the struggle and I understand the struggle and I would love to be there for others as an outlet for pain, frustration or just someone to talk too.
A few things I want to end with:
Always be your own advocate! This is something my mother taught me from day one. With being born with an invisible disability, you must do the research, you must come up with ideas, you must do whatever you need to do in order to get what you need in life. This is for literally everyone in the world, but for those of us that are differently abled, this a very important thing. There are so many resources out there that can help and all you have to do is look.
Your disease is a part of who you are, you can either accept it or deny it. Accepting it will make it easier on yourself. It can be very hard to accept, and I’m still working on it even today. I’m not huge into the whole ‘your disease does not define you’ it doesn’t, but it is a part of who you are. It’s something that is always on your mind and something you always must think about. Will I have the energy to do that? How will I feel the next day? How much pain am I in today? What can I accomplish today vs. what do I need to accomplish? It shouldn’t be everything that you are, but it is a part of you. Accept it, talk about it, reach out to others for help, guidance, and if you have advice give it! You never know who you can help!
Don’t be afraid to seek someone out! Having an invisible disease is hard and many will not understand what you are going through. Find people who care about you. Find people who understand what you are going through. Find family, friends, doctors, therapists that will listen and talk with you. If you are still struggling see a therapist, it’s been wonderful for me and can really help.
Talk about your disease and educate others. This is the only way other people will learn about the disease and what you are going through. You will always get people saying, ‘I’m sorry, I hope you feel better’ (which you never will) or ‘My sister/cousin/friends’ friend has that and he/she did this and got better’. Just nod and say thank you and move along. Some people will not understand that most invisible illnesses will not go away and that some are genetic, so there is nothing you can do to get ‘rid’ of it. If there was, we would all be trying those things and getting better.
Be Kind. We learn this because of our illness but you never know what people are going through. They may seem happy, put on a smile, and go about their day. But you don’t know if they are in pain, if they have been hurt, and if they are mentally about to break down at any moment. Be Kind to everyone that you come across, it’s the human thing to do.