Dealing with an invisible illness is difficult, to say the least. All of the thoughts and problems I shared in writing just now were happening inside my head, while well-intentioned friends would remark that I “looked really good.” Yes, I look good. But inside I’m a mess. Sharing has been and will continue to be a struggle for me. I don’t want to sound like I’m complaining, ungrateful, or just looking for attention. But I also know that I can’t keep this huge chunk of what I deal with every day to myself. I would be doing myself, my children, and anyone willing to comfort me a huge disservice. We cannot take care of each other if we’re not honest about our struggles. So here it is – my attempt to share the truth about what it is like to cope with a chronic illness.
I can’t say that I was shocked by my MS diagnosis. I recall the exact moment I just knew. I was laying in my daughter’s room watching her sleep while I tried not panic as I once again read through the list of possible conditions that matched my symptoms. When I read the words Multiple Sclerosis, I felt a sense of calm and understanding, mixed with a sinking feeling in my gut. “That’s it,” I told myself. “I know what this is, and it’s going to change my life.” After the months of struggling and guessing, it was a relief to finally have a definite medical answer a few days later. Unfortunately, this one answer came with a host of new questions – many of which do not have answers: what is happening, why is it happening, how can I make it stop, and how is my life going to change?
Those early days were filled with mourning for the things I would most assuredly lose. My imagination had me rendered immobile, speechless, and blind; a breathing statue in constant, invisible pain. I could find no meaning in a life like that. My loved ones would spend their precious time caring for me while I offered nothing in return; my children would sacrifice their own pursuits for my sake. I’d be nothing more than a burden.
But in a moment of clarity several weeks later, I snapped out of it. I had run through all the possible scenarios and came to the realization that everything I was worried about was something that could possibly happen to me anyway, MS or not. Some day I may be in a wheelchair, too weak to stand. Some day I may lose most or all of my vision. Some day I may have difficulty remembering things. I could wake up in pain and go to bed in pain. These are realities for anyone fortunate enough to live a long life. It’s just the price of being human. I was coming to terms with my mortality – a deep understanding of the fact that my time on earth is limited. And so I concluded that having MS is something akin to aging on an accelerated timeline. Accordingly, my midlife crisis began. I started evaluating what I’d been doing for the past decade and deciding what to do with the time I have left. This line of thought led me to make some major life changes that I’ll explore more in-depth in another post. For now, I’ll simply say that I pulled myself up by my bootstraps and prepared to take on the world, determined to use every bit of myself while I still could.
Inside of my existential crisis were some more concrete issues that had to be dealt with, the first being a decision about what course of treatment to pursue.
There are two categories of medications I had to look at. The first was for symptom management – something for pain, something for fatigue, etc… I opted not to start any of those meds because I wanted to hold off as long as I could, waiting until I really needed them. The second category is called disease modifying. These medicines are intended to interfere with the disease process and, ideally, prevent further progression and disability. There’s no guarantee that they will work, and there’s no good way to know for certain if they are working. Yearly MRIs can show whether or not new lesions have formed, but it’s still not enough to show causation, just correlation. I view taking these meds as like holding an insurance policy. You don’t know if you’re going to have an accident and need insurance, but it’s better to be safe than sorry. I don’t know how my disease would progress without treatment, but it’s best if I don’t leave it to chance just to find out. These medicines currently exist in the form of injections, pills, and infusions. Only the injections have been around long enough to be studied in terms of longterm safety. From that category, I had three to choose from. Two are to be administered once a week, but are known to cause flu-like symptoms for a day or two afterward every time. I chose the third option, an injection done 3 times per week that causes far fewer, more manageable side effects, like giant bruises and bee-sting like injection site reactions, but also comes with the risk of an episode that feels like having a heart attack.
The downside to beginning any of the medications presented was that I would have to end my breastfeeding relationship with my two children. The unethical nature of testing medications for safety during pregnancy and nursing means that there’s not enough information to give it a safety rating. For me, is was not worth the risk of transferring the medicine to the children through the milk, not knowing what the effects on them could be. This was one of the most devastating steps of dealing with my new reality. Waiting for the medicine to ship and a visiting nurse to teach me how to administer my own injections meant that I had about three weeks to prepare myself and the kids for the switch to formula or cows’ milk. During that time I had my husband take pictures to document those precious moments. I cried A LOT. I replaced nursing sessions with bottles and dealt with the physical pain that comes with the process of weaning and letting my milk supply diminish. I cried A LOT more. I knew that we would all be fine, but the heart doesn’t always listen to the brain. Some things just have to be felt.
Emotions aside, the most challenging thing for me initially was simply understanding the language used to talk about what is happening. I’m still not even 100% sure. The terms flare-up, relapse, exacerbation, attack, and worsening all mean the same thing – new or worsened symptoms that last for more than 24 hours. There is also pseudoexacerbation, which is just a temporary worsening of symptoms caused by a transient influence like fever, infection, stress, exhaustion, or exercise. A real exacerbation is a sign of increased disease activity and might be treated with high-dose, short course steroids. A pseudoexacerbation just highlights the damage that has already been done and will resolve on its own.
So now imagine being at home, newly diagnosed, and feeling your legs tense up. They won’t loosen no matter how much you rub or rest them. Your legs have felt like this before, but not a regular basis. It comes and goes for the next week. Is it a relapse or not? Do you seek treatment or let it ride? We’re supposed to listen to our bodies, but when you’ve got little to no experience to draw from, it’s hard to know what to do with the signals your body is sending.
Like I said at the beginning, there are not a lot of answers to the questions that come with this disease. Each person with MS is different – symptoms, trajectory, response to medications, so we all must form an intimate, respectful relationship with our bodies to know what works and what doesn’t.
Below is some information I’ve learned that I can (confidently?) share.
What is happening?
Multiple Sclerosis is an autoimmune disorder that affects the central nervous system. The neurons that are responsible for transmitting messages from the brain to the rest of the body and back again come under attack by rogue T-cells that mistake them for foreign substances. Recently, it was shown that a specific type of B-cell is responsible for activating those rogue T-cells, which then eat away the fatty covering of the neuron called the myelin sheath. The myelin sheath insulates the signals being sent through the neurons, preserving their strength and integrity. When that insulation is missing or damaged, glitches in the communication process between body and brain begin to happen. The most commonly used metaphor for this is an electrical cord that has had its insulation stripped or wires frayed. I think of several phone chargers I’ve had that became bent and frayed over time right below where they plug into the phone. Those cords are still usable, but definitely not reliable. Sometimes they charge, sometimes they don’t. Sometimes signals are communicated clearly throughout the body; other times, they become weakened, distorted, or lost altogether.
Why is it happening?
No one knows!!
Much of the research being done is focused on figuring out what causes the immune system to malfunction. One consideration is genetics. While MS is not considered a genetic disorder, it is possible to be genetically predisposed. People with a parent or sibling that have MS have a 2.5 – 5 percent chance of developing the disease, while the chances for an average person are only 0.1%.
This genetic link may actually be related to the seemingly opposing end of the spectrum belief that MS is a result of pathogenic viral interaction, thanks to HERVs – “fossil viruses” marked into our DNA through infection of cells involved in reproduction. These retroviral genes get passed down from generation to generation, and can become “potential modulators of gene or protein expression; potential superantigens, or potential agents of molecular mimicry, hence a candidate mechanism for the presentation of autoimmune conditions.”
- My paternal grandfather had MS
Other considerations for a viral etiology that have been the subject of much research include HHV 4, HHV 6, and VZV. HHV 4, better known as Epstein-Barr, is best known for causing Mononucleosis. EBV will infect the B cells of the immune system and, once the initial infection has been brought under control, will remain latent in the body for life. HHV-6 is best known for causing Roseola and will remain in the T cells for life, latent or active. VZV is best known for causing Chickenpox and establishes lifelong latency in the cranial nerve and dorsal root ganglia. Reactivation of this virus is the cause of Shingles. All of these viruses are known to potentiate each other and be part of a chain reaction that results in an autoimmune process, like the demyelination in MS.
- I had Chickepox as a child
- I had Mononucleosis as a child
- I most likely had Roseola as a child
- My son had a documented case of Roseola when I was pregnant with my daughter
My theory – I was exposed to the HHV-6 that was causing his Roseola. I didn’t get sick because, most likely, I’d already had a the virus myself as a child and it was in a latent state. More than the normal exposure of living together, that infection was being communicated from his body to mine through the breastfeeding relationship. I believe it is possible that those conditions reactivated HHV-6 in me, consequently reactivating EBV and/or VZV, initiating the immune response that now is the root of my MS.
Reality – I could be completely wrong. No one knows.
How can I make it stop?
Is there a cure? No. There really cannot be without a complete understanding of what causes the disease in the first place. Next best option – take a disease modifying medication. There’s no guarantee that it will work, but there’s a chance that it could slow or stop disease progression.
Take a vitamin D supplement and/or get moderate (safe) amounts of exposure to the sun. Vitamin D deficiency is one thing that experts can agree on! People who live further away from the equator are more likely to develop MS than those that live near it. The main difference? The amount of sunlight and natural vitamin D.
Autoimmune disorders are inflammatory. This is why steroids are given during an MS flare – they reduce activity in the immune system and decrease inflammation. To help avoid flares or weaken ongoing symptoms, efforts should be made to decrease inflammation in the body through natural methods. Diet is the simplest way to do this. Like almost everything else with MS, there are many suggested diets to follow but no definitive answer about which is best. However, it would stand to reason that avoiding foods that are known to cause inflammation makes sense.
An increase in body temperature or stress related hormones both put more pressure on the system, and can make existing problems more apparent. Combine those with an already fatigued system and they form a perfect storm of conditions that can trigger a full blown relapse.
So, how can I make it stop? I can’t. BUT I will give myself the best chance if I take my medicine and vitamins the way they are intended, get good sleep, eat healthy foods, keep my temperature regulated, and reduce the amount of stress in my life. For someone in a position of feeling helpless and betrayed by their own body, it can be very comforting to have a few small things to focus on while working on accepting that not everything is in your control. You do the best you can with whatever comes your way.