Having struggled with anxiety all my life, in September of 2012 I started suffering from what seemed like mild panic attacks. I had been diagnosed with MS nine months before and found out that Avonex not only wasn’t doing anything to prevent disease progression but it was also messing up my liver and thyroid. Plus, due to bureaucracies I had to wait before being able to move to another drug. My chest had begun to hurt, right where my heart is supposed to be, and when it hurt really bad I had trouble breathing. It even got to the point I wondered if I had heart problems. So I went to see my psychiatrist.
Now, I’m fairly open to taking suggestions and trying new things if that means there’s hope my symptoms will improve. But my psychiatrist just went: “I’m not going to prescribe you anything. You see, what you learn from a disease like MS is that you don’t really control anything in your life, so you shouldn’t worry so much.”
So I just spent 70 euros on “expert” advice that I could have heard from my mom, dad, boyfriend and closest friends… for free? Thanks, doc. What’s next? Telling me to smoke some weed?
I never saw him again. Found myself a new psychiatrist who listens and cares. She prescribed me Escitalopram and my chest never hurt again.
My mother suggested I saw an acupuncturist so off I went. I kept telling him about my fatigue, blurred vision and trouble sleeping but he didn’t seem to listen because all he wanted to treat was my legs, despite the fact that I stressed I had never had mobility issues. But that wasn’t the worst. One day, as I was telling him about my symptoms and some of my fears, he said there were a lot more complicated situations out there, and went on talking about the work he did with children with cancer.
Dear Mr Acupuncturist,
I’m not a total moron and I’m perfectly aware there is a lot of misery and suffering out there, and things that just don’t make sense and are just not fair. But since I hired you to see if there was anything you could do for me, can you at least for these sixty minutes focus on me? Then we can both go on worrying about people who are suffering more than me. I can even buy a “suffering meter” to see who qualifies.
And as if this wasn’t enough, I noticed my mother somehow knew about things I had never told her but had mentioned to him. Have you ever heard of confidentiality, Mr Acupuncturist? Privacy, maybe? Trust? I can’t even…
I went to see another neurologist to hear yet another opinion about all MS drugs available, their risks and benefits. As we were discussing second-line treatments, which heavily suppress many functions of your immune system, he said something as unbelievable as, “You needn’t worry about catching something like, let’s say, AIDS, ’cause you’re not gay.”
Dear universe, did I travel back in time and I’m in the 80s again? Am I speaking to a doctor or a religious fundamentalist? Should this person be practicing medicine? I’m puzzled.
I found out I have endometriosis. My gynecologist said, “We’re gonna need to operate as soon as possible. I’m going to schedule all the pre-op exams.”
I wasn’t happy about undergoing surgery, so I went for a second opinion. Doctor said “I’m not going to operate a 30 year-old who’s never had children and who has another condition like MS without at least trying some medication first.”
Bless you, doctor. Medication is working, my cyst is almost invisible now and my ovaries are still intact. You’ll always be my gynecologist.
I have a new primary care physician. I went to see her, tell her about my conditions and what generally life is like for me. That’s when she says, “A lot of people with MS are able to do pretty much everything in their lives, why can’t you?”
If ignorance were music, you’d be the national orchestra, doc.
It started Sunday night. As I was saying goodbye to my mother after our usual Sunday dinner at her place, she mentioned she’d read somewhere that 7 am was the best hour to wake up. Something to do with sleep cycles. I jokingly said something like, “Unless you’re living with multiple sclerosis,” and reminded her that I didn’t use to have any trouble getting up in the morning before, but for the past years I can’t seem to get up. Sometimes the alarm rings every 5 minutes for half an hour and I simply don’t hear it. And then my mother said, “Yes, you changed a lot, but don’t forget you’re also taking things to sleep and those make it harder for you to get up.” I replied I’ve only been taking meds since 2011 and that my troubles started earlier, but as I went home I started thinking “What if?” What if the meds are taking even more of my energy than MS already does? Last year I stopped taking one of them and what happened was that two months later I was insomniac again, waking up at 2, 3 and 4 in the morning unable to go back to sleep again. That means I’m not leaving them anytime soon, but it got me thinking.
And then my what if’s snowballed. What if my fatigue is not solely MS-related? Endometriosis is said to cause fatigue, as well as depression and stress and anxiety disorders. Could my fatigue be the sum of all these causes? (No wonder I’m tired.) And what about brain fog? I spent Monday and Tuesday with a bad case of brain fog. It got so bad that at a certain point I realized I didn’t know how to do my job anymore, the one I studied for and have been doing for the past ten years. You see, among other things, I translate for a living, and after staring for hours at two pages I needed to translate I suddenly found myself thinking that Google Translator is an excellent tool. (If my next post is about me being fired you know what happened.) What if the meds are also contributing to brain fog? Or what if brain fog is simply caused by my lack of motivation, that on the other hand makes me spend most of the days daydreaming of better things and dissociating as a means to escape my normal life?
And what if I made up all these what if’s because I’m still in denial and looking for clues that tell me that after all I don’t have MS (they could have switched my MRI’s in the hospital with someone else’s) or that it isn’t so bad?
My health defies any logic. The only two things that usually lift my brain fog are lying down and resting, or taking a walk, preferably next to trees or water. On Monday, as I was too tired to go for a walk, I lay in bed a little before dinner. It seemed to make it worse. On Tuesday, I didn’t rest and instead went shopping. That seemed to do the trick, as on Wednesday my mind was clear. So the brain fog is either motivation-related, or my MS didn’t like the fall/winter collection and went into hiding.
My behavior also seems to defy logic. Yesterday there was a family dinner, and I suddenly heard myself cutting everyone off mid-sentence to tell them it was getting late and I needed to go. I usually have to think and gather my strengths before being this assertive, but last night it just came out naturally. And I didn’t feel guilty about it. After all, both my father and stepmother are retired, and my sister is taking these last days of August off, so I was the only one who needed to get up early today to go to work.
Last but not least, my therapist thinks I’ve been too focused on my health (seriously? lol) and that maybe we need to work on other areas, such as my social support network. But I’m still on hermit mode, so I’m not sure how that is going to turn out. Will keep you posted. 🙂
So… it’s been a little while. I went away for a week on vacation and when I came back it’s like all hell broke loose, more or less.
The good news is that the ultrasound revealed that my cyst keeps getting smaller as a result of the medication I’m taking. The doctor also examined me and he said he couldn’t even feel it anymore. The pain I sometimes get in my lower abdomen is apparently not related to my endometriosis, so it still remains to be diagnosed, but overall good news.
The bad news… After a week completely free of ms symptoms, as soon as I got back I started feeling intense fatigue again. I woke up on Monday and my right arm was numb and I was so tired my legs hurt and felt heavy, as if I had cement blocks attached to them. Throughout the day I noticed my left hand was always stiff.
These symptoms eventually subsided as the week went on, except for the fatigue and the feeling my legs were heavy. I kept spreading peppermint gel on them to make it better and it helped a little.
Now what am I to make of this? We know that stress exacerbates ms symptoms, but I think it goes a little beyond that. How we feel psychologically also messes us physically. Because the truth is I feel stranded in my everyday life, being kept in an office/cage from 9 to 5, being given responsibilities I don’t have the skills to deal with and wasn’t taught how to. And in the end of the week, life seems to make little sense. I don’t see ways out, I don’t see any meaning. I look for meanings and fulfillment in other places, but by the time I get home from work I’m usually so tired I can’t even write a few words on Twitter, let alone do anything else.
The other day I was on a Facebook group for people with ms and someone was telling she got her disability retirement at 31, which is how old I am now. Besides the fact that I don’t think anyone would give me retirement just because I feel tired all the time, it doesn’t even cross my mind throwing in the towel at such a young age. I don’t think I should give up because I don’t even think the problem is the disease itself but the external factors that are contributing to it. If I were given more flexibility in terms of working hours and the opportunity to work from home I believe my symptoms would generally improve. But unfortunately the company where I work is still operating in the past century, and given the economic crisis my country is struggling with, the prospects of finding another job look dim. I should be glad that I have a job and that my medication is still made available, though I know in other countries there are already new and more sophisticated options. So in the meantime I’ll just keep on dragging those cement blocks and hope everything will be fine.
2014. I had one of the busiest and most intense six months in my life. Apart from my 9 to 5 job, I enrolled in a postgraduation course as soon as I was told I didn’t need surgery because of my endometriosis. I also decided to start this blog, my Twitter and I started developing ideas to raise awareness to several health issues. Then, in March, I was told it was my turn to take care of everything there is to take care of in my apartment building. I don’t know how it works in other countries, but where I live when you have an apartment every year someone new is appointed to manage the common areas. That includes supervising the elevators maintenance, the cleaning services, and whatever you may think of. On top of all this, let’s not forget I have to manage the symptoms of all my conditions. There were moments when I was under a lot of pressure and stress, and feeling exhausted. And I was scared too. When I was diagnosed with multiple sclerosis, I had gone through a prolonged period of stress, and then, when things finally settled down I had the exacerbation that led to the diagnosis. It’s like my body got so used to the stress hormones, that it freaked out when there weren’t any. Funny, right?
But I decided to take a well-deserved break anyway. A week away from my job and my neighbors. I took all my books because I have a paper I need to write for my course, but so far I haven’t done much besides sunbathing by the pool, taking long walks and eating and sleeping a lot. I get tired from swimming in the pool and wandering with my camera, but it’s the good and normal kind of tired at the end of the day that everyone gets. It’s not the kind of tired that I get during the rest of the year and that I associate with depression and multiple sclerosis. The “I’m sick” kind of tired is a feeling of physical and mental exhaustion caused by looking around and seeing no ways out, no possibilites – of being trapped.
On Monday I will go back to “normal” life, even though I don’t thing there’s anything normal in spending an entire day inside an office looking at a computer. I will have an ultrasound to check on my cyst, and I’m honestly a little worried about it, because I’m getting this bad feeling. Whatever happens in the second half of the year, I know one thing for sure: when I’m on vacation, no stress and no overwork equals no ms symptoms. And I’m going to enjoy every minute of it.
When I was diagnosed with multiple sclerosis, my neurologist explained to me in broad terms what happened in the brain of people with this condition. I realized it was an autoimmune disease, to which she said yes, it could be considered an autoimmune disease. I sobbed a little more (I sobbed the whole time) and asked her “So this is another way I found to hurt myself?” She told me not to think about it that way but looking back it makes perfect sense that I have an autoimmune disease (two, if you count with endometriosis). I never tolerated myself much, always brought myself down, and due to specific circumstances in my upbringing I never had much emotional independence, sense of self, or psychological boundaries. So no wonder my body was confused and shooting whatever seemed like a nice thing to shoot.
Autoimmunity fascinates me from every perspective. From a biological point of view, it’s not very smart, is it? It’s just pure self-destruction. From a psychological point of view, can our body really reflect a poor sense of self? Or is there more to it that we don’t even dream of? It remains a mystery, one that scientists are still trying to find answers to. And the list of autoimmune diseases keeps growing, as evidence suggests well-known diseases such as schizophrenia may have an autoimmune pathogenesis. Wikipedia lists many of these with links to scientific articles. It’s worth taking a look.
It is also worth taking a look at how other authors see autoimmunity. In Why Zebras Don’t Get Ulcers, Robert M. Sapolsky notes that both physical and psychological stressors seem to cause an early stage of immune activation. However, long-term/chronic stress begins to have the opposite effect, namely, suppressing immunity. But why can’t we not just let our system remain at the enhanced, improved level achieved with temporary stressors and “get the benefits of an activated immune system all the time? Metaphorically, why not have your military that defends you always on maximal alert? For one thing, it costs too much,” he explains. “And, even more important, a system that’s always on maximal, hair-trigger alert is more likely to get carried away at some point and shoot one of your own guys in a friendly fire accident. And that’s what can happen with immune systems that are chronically activated – they begin to mistake part of you for being something invasive, and you’ve got yourself an autoimmune disease.”
Doctor Gabor Maté also links autoimmunity with chronic stress, but he goes further along the way explaining that chronic stress most of the times originates from relationship patterns established during childhood. In When The Body Says No he writes that “The blurring of psychological boundaries during childhood becomes a significant source of future physiological stress in the adult.” He notes that “Within the individual organism, physical mutiny results from an immunologic confusion that perfectly mirrors the unconscious psychological confusion of self and non-self” and adds that “Cancer and ALS and MS and rheumatoid arthritis and all these other conditions, it seems to me, happen to people who have a poor sense of themselves as independent persons. On the emotional level, that is – they can be highly accomplished in the arts or intellectually – but on an emotional level they have a poorly differentiated sense of self. They live in reaction to others without ever really sensing who they themselves are.”
This unfortunately makes perfect sense to me considering my personal history. I’m not sure how it applies to the millions of people diagnosed with these diseases but I think it adds a valuable ingredient to the genetic and environmental factors we know about. You see, I always wondered why my sister had mono when I was 8 and I didn’t catch it then, even though I would steal her lipsticks and drink from the same cups. I caught it when I was 18. And why when exposed to the same flu virus some people are bed-ridden and other just have mild symptoms? The virus is the same, right? So there’s got to be something in our immune systems, which in turn are highly influenced by our emotions, that determines whether we’re going to get sick or not.
There is a famous story about Louis Pasteur that illustrates this view. Claude Bernard, his contemporary, thought that germs would only cause harm to the body if it presented the right conditions for them to thrive. He emphasized that it was more important to keep the organism “clean” and in balance than to attack the germs. Pasteur didn’t agree. He thought germs and microbes were the only reason people got sick. However, later in his life he came to change his mind. He’s quoted as saying on his deathbed, “Bernard avait raison. Le germe n’est rien, c’est le terrain qui est tout.” (“Bernard was right. The microbe is nothing, the soil is everything.”)
From very early in my life I had many different problems. I started having asthma when I was 2 and a half and I never spent more than a week in daycare with other children. Every year my mother would enroll me but, even though I have no memories of those times, I suspect we both suffered from separation anxiety. I was shy and had a little social phobia. My mother overprotected me and didn’t equip me with the tools to go out into the world, so being away from home without anyone familiar brought me so much anxiety I would soon fall ill with something. When I turned 5 and it happened again, my mother started panicking. The next year I would have to start school no matter what (homeschooling is not really an option in my country). So after talking to my pediatrician, he gave her the number of a child therapist.
From the age of 5 to the age of 10 I went every week to see this therapist. I have very few memories of these sessions (which is weird considering they span for a period of 5 years) but when I try to look back the feeling is that I was generally happy there. And I did make some progress. I had no trouble at all when I started school at the age of 6, I made friends on my own, asthma went away around 7 or 8.
However, all these years later when I look at myself and my “collection” of illnesses I wonder what was it that therapy did to me. I think that all that it did was make me functional, while it did nothing about the underlying problems that had resulted in me being a very troubled child. For instance, I don’t let anxiety and fear stop me from doing things that I find challenging, but I still get anxious, and those anxiety symptoms have been taking a toll, eroding my entire system. Still, I’m the epitome of functional. No one knows I’m sick if I don’t tell them, I work full-time as a copy editor, I study at night, I exercise, I see my friends and family, I have a lot of interests, I keep my apartment as clean and tidy as possible, I manage insomnia, depression, endometriosis and multiple sclerosis as best as I can… I am so functional and apparently so normal that when I do complain about something no one really believes me. Sometimes not even doctors, which is probably the reason why I went for so many years without a proper diagnosis, proper medication and proper support.
But I’m also the epitome of troubled. My functionality has been disguising a lot of issues that date as far back as my early years and go on up until now. And the clues were all there. Coming from a family with a history of mental illnesses such as schizophrenia, bipolar disorder, addiction, and depression should have raised a few eyebrows. But no. They looked at me and saw this gentle harmless young woman who wouldn’t want to be any trouble. And me, I was too puzzled to even be able to make sense of things, too scared to trust people.
So today I wish I was a little more dysfunctional. Maybe people would have taken me seriously. Maybe this wouldn’t have been hurting for so long.
Second opinions are of great importance when we’re talking about delicate decisions. I have two neurologists and I always see both when a change in medication or other therapy is being considered. Last year, however, a second opinion was even more important when a cyst was detected in my left ovary. It was over 4 centimeters. After it was confirmed that it was an endometrioma and I was subsequently diagnosed with endometriosis, my doctor wanted to operate me right away. She told me that, even if it had not grown between the first ultrasound (the one that detected it) and the second (the one that confirmed it), it wasn’t going to go away, so they had to remove it.
I went to ask for a second opinion, because I wasn’t going to let anyone cut me open without being sure it was really necessary. The second doctor I saw wanted me to try medication before making a decision. So I took the medicine he prescribed and after a while I went for another ultrasound. The cyst was smaller. It was half the original size. He told me that, even if this medication proved not to be working, there were still other options before going for surgery. So I’m currently maintaining the prescribed treatment and happy about it.
Now I’m aware that every situation is different and some situations may really require surgery. But I’m also aware that I was told the cyst wasn’t going to go away and it’s now much smaller. If I hadn’t seen another doctor, I could probably have part of my left ovary cut out by now. So my advice would be to always look for more information before making such a decision.
Sometimes I still get a little down. Sometimes I still feel like crying. And sometimes I still cry late at night. The last four years of my life have been extremely hard and I still can’t help but wonder where exactly all those hardships were meant to lead me, what exactly those hardships meant to tell me.
2010 and the most part of 2011 were all about heartbreak, disputes with family members, and finding, buying and building up a little apartment where I could hide. I believe the strain and prolonged stress of all this ultimately led to the exarcebation that had me diagnosed with multiple sclerosis in late 2011.
10 months of treatment with interferons ensued. And that was hell. The side effects of the medication were worse than the symptoms of the disease. No paracetamol could help me. It just didn’t do anything. And when I finally changed the medication and things started to settle, some months later I was diagnosed with endometriosis and told I had to undergo surgery to remove a cyst in my left ovary. Fortunately the surgery ended up not being necessary, but until more medication and tests confirmed it I lived in fear and anxiety.
Recently I met someone I developed a little infatuation for. I don’t think he’s interested, but my mind? My mind is all about castles in the air and fairy tales. I understand why my mind needs to go into a sort of trance and daydream as if its life depended on it. After all, the past years have been so dark, bleak, and grounded. But I’m not 15 anymore. I’ve known disappointment. I’ve known reality checks. I don’t want more heartbreak. I’ve lost people because of my diagnosis. Because they didn’t understand. Because they didn’t want to understand. And I got a little too tired of feeling I needed to explain myself to them and apologize for not being as healthy and “normal” as they wanted me to be.
I’ve been kicking depression out of my life, trying to focus on being well and holding on to all the positive things I have. And I’m still kicking it. But sometimes, when in my mind someone new holds the promise of better times, I feel myself going down again. Because I’m not even sure he remembers my name. I just made that promise up.