There are certain moments that still stand out, painful as they are to recollect.
In the early days of my disease, when my symptoms first started to manifest, I didn’t know how to respond to what was happening to my body. Initially, I shrugged it off. I figured my leg cramps and sore back were the result of being out of shape. When the symptoms persisted, and I noticed my muscles were becoming weaker, I started to worry. I pulled out my medical records from four years prior and read over my diagnosis – dysferlinopathy – searching for clues on what was happening to me. I read the neurologist’s notes on the expected progression of the disease, and suddenly the lightbulb turned on: my strength wasn’t coming back.
No one who experiences a life-altering condition such as progressive muscle weakness is expected to handle the emotional burden perfectly. I don’t know of anyone, in all the hundreds of stories I’ve read, who gracefully accepted their diagnosis from day one. It is a grieving process to realize that your life is going to be turned upside down by the limitations of your body. Everyone wants to live a normal, healthy, active life. To have that taken away is not something that is easily accepted. Some people never do.
My own path to acceptance was difficult. Looking back, I’m disappointed in how long it took to come to grips with the magnitude of my diagnosis, although on the positive side this journey enabled me to become the person I am today. But it was still painful, full of many situations I’d do over again if given the chance.
My biggest regret, above all, is how I handled my relationships with other people during this time. Whereas now, in my weakened state, I understand just how important it is to have a support system of friends and family in place, back then I had no clue. 2008-2012 was my denial period, “The Dark Ages” of my life.
I remember the feelings, the vain moments where I tried to hide my weakness from the rest of the world. Whether it was hauling my laundry up the stairs long after I should have asked a roommate to help, or wearing jeans in hot weather to avoid people seeing my thin calves, I didn’t want others to know what was going on.
But holding in toxic emotions – fear, depression, denial, you name it – was destroying me on the inside. I stopped sleeping well. I developed heartburn. I was in a constant state of worry and stress.
My body continued to weaken during this time, culminating in my first fall in 2010. I was walking with my roommate when it happened. As soon as I pushed myself back onto my feet, I realized the gravity of my condition and what it was doing to my body. When he asked what happened, I realized I couldn’t hide it anymore.
My parents always knew my diagnosis, but like me, they thought it wouldn’t manifest until much later in life. We had shrugged it off at the time as a “missing protein”, and nothing more. When the weakness began to accelerate, however, I didn’t let on to them just how severe it was getting. It wasn’t until Thanksgiving one year where I tearfully confessed to my mother and sister on separate occasions how much it was weighing me down. This disease was much more than a missing protein.
I resisted telling my roommates for as long as possible, even my roommate who was with me the day I fell. I could tell they were perplexed when I didn’t run to catch a bus, or when I started using the railing to go up the flight of stairs to our apartment. Eventually, begrudgingly, I told them over email (we had a roommate email thread), although even then I don’t think they quite understood what it meant. At that point, I barely understood myself; my long-term prognosis was still unclear.
If I resisted telling my friends, I certainly didn’t open up about it to my coworkers. I told my boss, but that was it. Every time I was on the verge of telling others, I stopped myself. The situation didn’t feel right. I was uncomfortable with what I should or should not disclose about my condition in a professional setting.
Even after disclosing my condition to those closest to me, it provided little emotional relief. I was still ashamed, still embarrassed to ask for help. Although my friends and family now knew what I had, they did not understand what it meant. They did not know how much it hurt me inside to live through this transition, mainly because I refused to tell them.
I thought I could handle it all myself, that it was my burden to carry, my fight alone. I did not want others to think of me any less, or see me as disabled. At the time, being disabled carried a major stigma.
A consequence of this emotional struggle was that I began to shut myself off from others. I stopped going out with my roommates, for fear of falling. I stopped enjoying myself and being spontaneous, for fear that I’d trip over a sidewalk or be put in a situation where I’d have to do some sort of physical activity where I would show that I didn’t have any strength.
In October 2011 I knew I had to move out of my apartment. I couldn’t go up the stoop and flight of stairs to my room any longer without significant difficulty. In retrospect, had I been more open about my condition and let my friends in on the emotional struggle I was fighting, it would not have come as much of a shock to them that I was leaving. They certainly would have prevented me from re-signing the lease when it came up for renewal in September. It is safe to say I mismanaged the situation, mismanaged our friendship, and allowed for the opinions (or perceived opinions) of others to create this great miscommunication. Although I was able to break the lease once I found a replacement tenant, it was a rocky time. Many arguments ensued, and I was miserable at how it all transpired. By not being open and honest about what I was going through, I created a difficult situation for everyone involved, further exacerbating the emotions I felt inside.
The apartment fiasco affected my work performance. My boss saw that I was struggling and pulled me aside one day to ask what was wrong. Eventually, she escalated it to her boss, who told me in no uncertain terms that I needed to get help. It was tough to hear, but I knew he was right. I started to see a behavioral health therapist, who, although I only went a few times, showed me the value of unburdening myself by talking to someone. I realized that by keeping all my emotions in, not asking for help, and viewing myself as a lesser person due to my disability, I was doing myself a great injustice.
It wasn’t until I started writing a few months later that I began to open up. I found writing to be the easiest outlet to share my emotions, as it was still a difficult subject to discuss in person. Once everyone finally knew – friends, family, coworkers – a weight was lifted. Through my writing, I was able to not only disclose my disease, but convey to everyone how it felt. From there, life snowballed in a positive direction.
I recount this rather unflattering time in my life for a simple reason: I don’t want anyone to wait as long as I did to open up to those around you. Use me as an example of what not to do, and how not to deal with the initial stages of adversity. I don’t fault myself for waiting so long, as again, there is no flat, linear path to acceptance. You can’t shortchange the grieving process. But there were definitely times where I wanted to open up, and just about opened my mouth to confess what was going on, but held back. If I had asked for help a year into my experience rather than four years in, I could have saved myself a lot of grief and aggravation. Although none of it can be undone, I learned a lot of life lessons during this time which benefit me today.
If you are struggling with something, anything, whether physical or emotional, and if internalizing it is affecting you negatively, my biggest piece of advice is to tell others. Do it when you are ready of course, but resolve to talk to someone. Rip off the proverbial band-aid. Even if you start with your closest friend or family member, it will be worth it. Do not be afraid to show vulnerability. Sharing your vulnerability with someone not only helps the other person to understand on a deep level what you are feeling, it also builds up a level of trust with that person that pays lifetime dividends. In fact, there are times where I’ve shared my situation and others have felt comfortable enough to share their own difficulties with me, stories they have not shared with anyone else. If people see you are letting your guard down, you give them permission to do the same.
What I should have realized, but didn’t until much later, is that the people who truly matter in your life aren’t going to judge you, and more importantly, they want to know, because they want to help. Everyone I told was willing to pitch in once they understood the magnitude of what I was going through. My roommates in my final days at the apartment started helping me with my laundry and driving me places instead of walking. They started proactively asking if they could help, which never would have happened if I continued to internalize my burden.
And if someone reacts negatively to the news, what does that say about the other person?
You don’t have to be dealing with a life-altering illness to have a valid reason to share your vulnerabilities with someone you trust. Life is difficult enough. To fight your struggles alone is not only unproductive, it goes against what makes us human. Humans need other humans in order to live a happy, fulfilled life. You don’t have to tell the world that you are depressed or are second-guessing your career; telling a friend is powerful enough. And if you don’t have friends or someone you can trust, there are communities on the internet or nonprofit organizations for every conceivable disease and worry. You can share your burden anonymously, without disclosing personal information. Even seeing a therapist can be tremendously freeing, especially considering that the stigma of going is unfounded and overrated. Trust me, everyone could benefit from seeing a therapist!
Society celebrates the independent, self-reliant person. But true success is shared. Anyone who has accomplished anything worthwhile in this world has had others who helped them get there, whether or not they realize it or acknowledge it. Every person you reach out to for help is a contributor to your ultimate success.
And like many things in life, it is a two-way street. You may end up inspiring others to reach out to you in the future to talk, for everyone is dealing with something, visible or invisible. Unfortunately, too many suffer in silence.