Suffering in silence: my struggle with alopecia areata

Patti's birthday 2014 photo

November 23, 2014. Can you tell I have alopecia areata?

by Patti Fish Stephens

February 9, 2017

This month marks 10 years since I was first diagnosed with the autoimmune disease alopecia areata. And since last week’s discussion topic in my Nar-Anon group was vulnerability, I have decided it is finally time to talk openly about my experiences with this non-life-threatening but emotionally devastating disease. After sharing on this blog about my struggles in dealing with my daughter’s heroin addiction I heard from so many people who appreciated my willingness to share openly about our family’s experiences. If I can share without shame about that, I decided I can share about this as well.

Alopecia is an autoimmune disease that causes a person’s immune system to mistakenly attack their hair follicles, resulting in patchy, partial scalp hair loss (alopecia areata), total scalp hair loss (alopecia totalis), or complete loss of all body hair, including eyelashes (alopecia universalis). According to the National Alopecia Areata Foundation (www.naaf.org), over 6.6 million Americans and over 147 million worldwide have or will develop a form of this disease in their lifetimes. Given current census statistics, this is equivalent to right about 2% of the population, which means you likely know someone who has this disease, whether you realize they have it or not. Odds are, you know more than one person with alopecia.

While it may be visually obvious that a person is missing all of their hair, it may not be apparent why; often, persons with alopecia are assumed to have cancer. Others who are completely or nearly bald wear a wig and so their hair loss may not be obvious. I fall into the category of alopecia areata, meaning I lose my hair in round patches on various locations on my scalp. Because my hair loss has always been on lower or back portions of my head, it has not often been very obvious. I have been lucky so far.

I should note here that there is no cure for alopecia, and it is not fully understood what causes the disease. There are treatments for milder forms, but none for more severe cases. More research is needed. While science has found that there is a genetic component to alopecia, it is believed that multiple genes plus environmental factors (such as a major life stressor) work together to create the right setting for the disease, making it unlikely to be directly passed on to the children of someone with alopecia. There is a lot of misinformation on the internet about the cause of alopecia; many claim that alopecia is caused by stress, which is inaccurate (and, incidentally, blames the victim). My doctor’s best explanation about this is simple: while stress doesn’t cause alopecia, it can likely trigger it, exacerbate it, and provoke recurrent episodes. My anecdotal history with alopecia would support my doctor’s theories.

I was first diagnosed with alopecia areata in the early months of 2007. My hairdresser, who is an exceptionally kind person, found it while cutting my hair. At that time my hair was quite short. She said, “Now, don’t panic, but I want to ask you if you have been pulling your hair?” Of course, the first thing I do when someone says “don’t panic” is to panic, but I told her no and asked why she asked. She knew I had been having a very hard time in the year since my brother’s death from overdose in January 2006. She explained that I had a bald patch on the back of my head about the size of a dime, that she had seen this before, and that I should call my doctor right away to get a professional diagnosis. She was absolutely correct when she explained that stress (such as my brother’s sudden death) could be a trigger for the disease, and that sometimes it will just grow back on its own.

I went to my general practitioner who diagnosed me with alopecia areata. She said there were several treatment options, and that I could be treated by either her or see a specialist (dermatologist). Because the spot was small (although it had grown a bit, it was only about the size of a nickel by now) and isolated, I opted to be treated by my GP. She told me there were many creams and ointments on the market to treat alopecia, but that by and large they didn’t have much effect. She said we could wait and see if the spot got bigger or started growing back on its own. Or we could inject it with a couple shots of cortisone, the only really effective treatment for regrowth, and come back to check its progress in a month. Although the shots sounded awful, I was scared of the bald spot spreading any further, so I opted for the shots and came back in a month. Indeed, the spot had new hair growth, although it was white. She gave me a follow up shot and told me to let her know if I had any recurrences.

I checked the spot from time to time, but I didn’t find any more bald patches and eventually the area of white hair grew back in my natural color. My hairdresser continued to check for new patches each time I visited, and after a year or so with no recurrences, I felt relieved that the alopecia seemed to be gone. By this time I was seeing a bereavement counselor and had made progress in processing my brother’s death. I was inspired to go back to school and pursue my dreams because I knew my brother would have wanted me to. He was always so proud of me no matter what I did, and I wanted to make the most of my life after seeing just how short life could be.

So in 2008 I went back to college part time and continued working part time. After several semesters of taking one or two classes at a time, I calculated how long it would take me to finish at my current rate. My husband and I decided I should quit my job and finish my degree once and for all, so in 2009 I became a full time student again at the age of 39. My son was also in college, so the finances were a real stretch. I pushed on with a full academic load and got involved with the college’s literary magazine and drama department. Although I was constantly exhausted from staying up late to study and write, I loved my coursework and all of the extra activities on campus, and I was grateful to my husband and kids for their support. For the first time since my brother’s death, I felt I was beginning to find my way again.

Then just a few weeks into my senior year, in what was to be my penultimate semester, my 22 year old nephew tragically committed suicide. That was September of 2011. Thus began a series of events which, I believe, caused enough stress to re-trigger my alopecia areata into an active state that has now been going continuously for over four years:  in the spring of 2012 my brother (whose son had just died) was rushed to the hospital with acute onset pancreatitis. We were informed that the mortality rate was approximately 80% or higher in cases like his. Amazingly, he lived, but I spent the last month of my senior year commuting to the hospital every other day to sit with him–terrified that I was losing my only remaining sibling–while juggling my senior thesis, an internship, an independent study course, and family life, all the while continuing to maintain a 4.0 grade point average and finally, graduating first in my college class.

Given the stress-trigger theory of alopecia, it’s no wonder that my hair loss returned with a vengeance that fall, almost exactly a year after my nephew’s suicide. (My brother’s death had also taken just over a year to trigger the active disease.) I had been at a new job just a few months when I started losing hair again, in nearly the same spot as the first time. I dreaded the thought of those shots again, so I ignored it, hoping it would just grow back on its own this time. But it didn’t. Instead, it got worse–much worse. By the time I got in to a dermatologist for treatment, the bald area was at least 2 inches x 2 inches. Every morning I styled my hair so that the bald area in the back was covered with as much hair as possible, then I sprayed it with hairspray until I had a helmet of hair that hopefully shielded my bare scalp from public view.

Because I had let the bald area get so large before going to the doctor; and because this time it was so much worse that my GP referred me to a dermatologist; and because I then had to wait weeks to get into the dermatologist, the area grew to a maximum of about 3 inches by 3 inches. Then, because I still wanted to avoid those shots, the doctor gave me a combination steroid cream and Minoxidil (Rogaine) treatment plan, which I tried for a month before returning for a follow-up exam. The treatment didn’t work, so the doctor recommended cortisone shots as my last remaining option. Thus began my monthly appointments in hell; since the winter of 2012/2013, I have had recurring bald patches for more than 4 years straight.

Most months I have had to receive 20-30 injections directly into my scalp. In the worst  months, I have received nearly 40. Each month, after examining my scalp for regrowth and new active balding areas, the doctor fills the syringes and tells me about how many jabs to expect. Now, here’s the thing about these injections: the website for the National Alopecia Areata Foundation mentions this cortisone shot treatment and states blithely that, “The most common treatment is the injection of cortisone into the bare skin patches. The injections are usually given by a dermatologist who uses a tiny needle to give multiple injections into the skin in and around the bare patches. The injections are repeated once a month. Both the needle prick and the slight tingling are usually well tolerated and there is no discomfort after leaving the doctor’s office.”

In my experience, this description couldn’t be further from the truth. Needle prick? It’s more of a stab. (My dermatologist explained that the injections have to be given at a certain depth to stimulate the hair follicles.) These injections HURT. They are PAINFUL. Sometimes they are downright EXCRUCIATING. But never, ever, would I describe them as being well tolerated. Sometimes a lot of shots are needed all in one area, and other times they need to be spread out all over the scalp. (I still haven’t decided which is worse.) And the part about “no discomfort after leaving the doctor’s office”? I was in so much pain after my last round of injections (only 10 last month!) that I was still having muscle spasms in my neck and shoulders FOUR DAYS LATER.

I have developed a routine which I follow to reduce the pain and lingering effects of my shots each month. First, I take two Aleve pills just before my appointment. Second, when possible, my husband comes with me and while my doctor injects my scalp, I squeeze his hand harder than I ever did in childbirth. It was during one of his visits with me that he asked the doctor if there wasn’t anything she could do to reduce the pain. She offered topical lidocaine, which ended up not being particularly useful; it was difficult to apply because I couldn’t find all of the active areas on my scalp very well OR predict where I would need shots beforehand. Later she began mixing liquid lidocaine into the cortisone so that the shots have a numbing effect, reducing the pain of injections in areas where a lot are needed in close proximity, and helping reduce scalp tenderness after injections.

After my monthly appointment, I often stop and reward my own bravery with a Malley’s Pretzel Crunch bar. When I get home I wrap flexible ice packs in a towel (so that I don’t get blood on my pillow case–did I mention the shots often bleed?) and lay down to ice the injection areas. And for the period of time when I was getting 30+ shots every visit, I also scheduled a massage for either later in the day or the day following my injections, because my neck, shoulders, and back would all be so sore from tensing up during the extremely painful injections. I also have to be careful when washing my hair for a few days after injections, as my scalp feels very tender, like it has bruises all over it.

While what I have written above describes the physical pain from cortisone treatments, it doesn’t begin to touch on the emotional pain of this disease. Because this post is already so long, I will tackle that topic in depth in a later piece, but for now I will say that currently my hardest struggle is with the fact that just a few months ago, I needed so few shots that my doctor and I were both optimistic that I was nearly in remission after 4 years of active alopecia. But this month’s visit made it clear that that is not the case.

Despite my disappointment, I know that I am lucky; my alopecia can be treated. Not everyone responds to the cortisone shots, so those patients have a whole slew of other issues (such as shaving their heads and/or wearing wigs) to contend with. Thus far my alopecia has stayed low enough on my head that it can usually be concealed by wearing my hair one length and parting it strategically to cover the thin areas. My patches always respond to treatment, but as the affected areas begin to regrow, new active areas appear on the periphery of the previously bald areas. This leads to a constant game of chasing the active areas around my head.

I hope this post has given insight into what alopecia areata is and how this autoimmune disease has impacted my life. I welcome questions about my own personal experience and hope that my sharing will further the public conversation about this condition. Most of all, I hope that by reading what I have gone through, it will raise awareness and compassion for others suffering in silence.

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Patti Fish Stephens