My name is Whitney and I’m one of your R.A.R.E. Advocates.
To start my blogs I want to give you the story of my Invisible Disability.
My first illness I was diagnosed at the age of three, 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 (Fun Fact: CMT used to be housed under the Muscular Dystrophy bubble). When the doctor took one look at the way I walked they told my mother that I had CMT too. That 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 specializes in CMT in Iowa. We spent a whole day there getting the tests done, meeting with a variety of specialists, 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 ‘ok you need to start taking some medication’. I was hesitant as I 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 able to now work the whole day and come home and still make dinner. It also helped with some of the leg pain. They recommended that I keep up exercising. As being sitting around too much can affect people with CMT.
Years went by and in 2018 I started to feel odd, not myself, and like something wasn’t right with my health again. My pain was continuing to get worse, my stomach had flare-ups, I began to get constant headaches and other odd ailments that I’ve never had before. My first thought was that my CMT was progressing yet again and that I may have to try different meds. 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 it’s 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 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 that knocked me out for a few months.
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.
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 I see a specialist at my local hospital. I booked the appointment and on the day of; I walked in and in about 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 to try and take more breaks, don’t get stressed out, and continue to take my current meds and still 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 have. 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, which turns out I have cousins that have it.
As of recently, I just got over a very bad flare that had been going on since October of 2019 and I’m slowly coming out of it. I had a series of very stressful events that caused the flare. And, it has been causing some intense pain body-wide, fatigue, IBS, headaches and stomach pain, and everything else in between. One of the worst parts about this flare was 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 was tired, worn down, exhausted mentally and physically, and just didn’t want to do anything.
Another bad part was the severe stomach issues that were undiagnosed until recently. Since October I’ve suffered from chronic pain in my stomach, constipation/diarrhea, cramps, no appetite, non-stop appetite, weight loss, and nausea. I was worried; so, I reached out to a doctor and after a colonoscopy and endoscopy they found nothing. As of right now, they believe I have IBS-C (the third invisible illness) and that is what is causing the issues. As of recently though, I’m pretty much back to normal with a few days here and there with gas and bloating. I also take a medication that helps with constipation that was seriously a life changer.
My illness has had a hard grasp on me even today. I’m trying my best to push through, I’m seeing a therapist bi-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, many people do not understand the struggle of living daily life with chronic pain. This has plagued me specifically in my working life. Currently, I work full time. Work during the fourth quarter and first quarter is always stressful. This year the stress has been extremely bad and had taken a lot out of me. Because of this, my mood at work wasn’t always great, I couldn’t keep a smile on my face and I couldn’t pretend anymore. 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.
I decided to make my job a little bit easier was to add an additional work from home day. Before this, I only worked from home once a week however I was recently allowed to work from home 2 days a week which will help immensely. I’m very lucky that most of our workforce is virtual so we deal with virtual employees every day. I’m a hard worker and do my job no matter how I feel. I never call in; I’m prompt and I never took advantage of the flexibility that I was allowed until now. If you work and require 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.
As of Mid-March, due to the Covid-19 outbreak, I have been fully virtual. I have gone into the office a total of 3 times just to grab some things but not more than an hour there at a time. I’ve enjoyed working from home and truly feel it’s done wonders with my illness. I’m still in pain, but I have felt like it is more manageable and I have been able to take more breaks. We are still virtual until they can figure out how to open the office back up. Who knows what will happen in the future and 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.
My most recent personal goal is to help and be an advocate to others. 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. That is why I’m an Advocate with R.A.R.E, I’ve found an outlet and I’m so happy to be a part of this team.
A few things I want to end with:
Always be your own advocate! And if you can’t lean on one of us for help! 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 in order get what you need in life. This is for literally for everyone in the world but for those of us that are differently-abled this a very important thing. There are so many resources here at R.A.R.E so please use us for everything you need us for.
Your disease is a part of who you are! Accepting it will make it easier on yourself. It can be very hard to accept it and I’m still working on it even today. I don’t like it when people say ‘your disease does not define you’ I mean, 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 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. We at R.A.R.E. are here for you and want to help you! We are people who understand what you are going through. You can also find family, friends, doctors, that will listen and talk with you as well. If you are still struggling to see a therapist, it’s been wonderful for me and can 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 if there mentally about to break down at any moment. Be Kind to everyone that you come across it’s the right thing to do.
I’m looking forward to learning about every one of you as R.A.R.E. continues to grow!