About a year ago, I went on a first date. Why I keep engaging in this insufferable act of self-inflicted punishment, honestly, I do not know. But, I frequently see this topic, regarding dating with chronic illnesses, come up on forums. People often ask, what's the best way to tell someone that you have a chronic illness, or more than one chronic illness, especially when an illness is invisible, and when is the right time to talk about it? I'll confess, I do not have the answers to these questions, and I doubt there is one right answer. For me though, given my name is recognizable and too easy to Google, and provided that clearly, I talk about all of these things online, to the level of extreme oversharing, I don't try to hide reality. I will tell anyone, and if they have a problem with it, I'd prefer to know sooner rather than later, especially since I can't change my health conditions.
I'm sure there are people that think that it must be easier to live with invisible illnesses, because you can go out in public and pretend to be normal, and no one has to know unless you want them to know. I, however, don't think this information is true. For one, I think there comes a point where you feel you're constantly pretending to be someone you're not, and you feel confined to a life that isn't authentic to your reality. You live in fear of people finding out, of being exposed for not being normal, of living a life that others cannot understand. Further, are invisible illnesses always invisible? Hardly. They pervade every aspect of your existence, and there's always something there if someone looks hard enough. In dating, too, some people have a knack for honing in on any insecurity you have and exploiting it and using it to manipulate you.
A close friend asked me once what were my insecurities? I realized mine were mostly with regard to symptoms, and it made me wonder what my insecurities would be if I didn't have endless symptoms to distract me. Given that possibility isn't my life, it's hard to know, but it is interesting to consider. Two of the things I'm most insecure about are my excessive sweating (hyperhidrosis) and my skin, both of which are extremely visible symptoms. Over the years, I tried a lot of options trying to eliminate my sweating. I tried DrySol, which burned my skin, which was of no surprise to me, given I'm allergic to aluminum. I also tried Oxybutynin, which is an anticholinergic medication used to treat overactive bladder, but off-label it's prescribed to decrease sweating. This medication was a minor miracle. I had the first summer in years I'd actually enjoyed, mosquitoes weren't nearly as attracted to me, and I produced sweat like a normal human being. On the downside, the medication made me feel like I was constantly stuck in the middle of a desert and could never obtain enough water. Oxybutynin decreases sweating, but it also decreases all bodily fluids, and I mean all bodily fluids. Saliva is incredibly important for dental health, but this side effect was one I was happy with which to live. After two years though, the medication ironically started causing urinary retention, and given I had hypertonic/nonrelaxing pelvic floor dysfunction that was still undiagnosed, I couldn't stand this problem on top of my already existing urinary problems, and I eventually stopped the medication.
As for my skin, one thing a lot of people don't know about me is the extent of my skin conditions. I work way too hard to hide them, and I think my reasons for attempting to do so are that my skin was the one area of my body about which I occasionally retained some sense of control. Even if I had no control over any other aspect of my life, at least I could sometimes appear to have my life together. I recently went through all my medical records, including my dermatology records, and collected all my diagnoses together into one list. Here are all my diagnoses pertaining to my skin (note: some of these diagnoses cross over into other fields of medicine, yet they are visible on the skin, so I have included them here):
- Actinic Keratosis
- Atopic Dermatitis
- Atrophic Scarring
- Cherry Angiomas
- Telogen Effluvium (Chronic)
- Comedonal Acne
- Congenital Melanocytic Nevus
- Hypertrophic Scarring
- Keratosis Pilaris
- Livedo Reticularis
- Raynaud's Disease
- Seborrheic Dermatitis
- Seborrheic Keratoses
I've also noticed there is quite a bit of confusion and misinformation out there regarding many of these conditions, including misinformation coming from doctors. I know, I know. I'm not a doctor. How dare I contradict what your doctor told you? Your doctor is always right, because your doctor is a doctor. I'm not trying to offend anyone, and I'm not giving medical advice, I'm simply providing accurate (and sourced) information as to the differentiation between some of the above listed conditions. Doctors, unfortunately, are human, and they do make mistakes. For all we know, some of them may have even been taught these conditions incorrectly. In particular, I've noticed a lot of confusion amongst patients between acrocyanosis, chilblains, keratosis pilaris, livedo reticularis, and Raynaud's. If your doctor told you differently, I am sorry, and please feel free to follow the links below each condition and confirm that I am correct.
In January 2018, I had a follow up appointment with my primary care physician. Typically, when I go for these appointments, I make an outline of the topics I wish to discuss and print us both a copy, so that the sheer amount of different subjects does not become overwhelming. Unfortunately, on that day, I forgot to print the outline. Since being diagnosed with CIDP, which I discussed in my last post, I've been slowly working my way through dealing with my numerous other conditions I'd been neglecting, due to a lack of time and energy to address them all. I've been working in order of importance, and now that the CIDP is being treated, I wanted to try addressing some of my other problems, so I wouldn't have to spend as much time daily dealing with the symptoms. Seborrheic Dermatitis (SD) is currently one of my most problematic skin issues, and if you go to a dermatologist for it, most doctors will simply attempt to suppress the symptom, rather than deal with the root cause. I dislike this approach, as it does not deal with the actual problem. In looking into what causes SD, I found that it is a common condition and frequently occurs in people with neurological disorders, and given I have CIDP, this information does make sense. SD is a complex condition in which the body over produces sebum (oil), which overfeeds the yeast that naturally live on everyone's skin, the yeast overgrow, and then the immune system overreacts to the yeast, producing red, flaky skin. Dandruff, for example, is a milder form of SD. Given I have always had problems with yeast, since I was a baby, including chronic yeast infections most of my life, it seemed likely to me that treating my yeast problems, rather than trying to suppress my SD with steroid creams, might be more effective. I've also had recurrent oral thrush for the past two years, which is more common in people with autoimmune diseases. However, when I brought this subject up, my doctor didn't exactly take it well and stated she believed me to be catastrophizing. To be fair, I had spent a lot of time that morning exfoliating to hide this problem (which is a matter of perception that she simply couldn't see it), and she was overwhelmed, and I get that, she's human. We've also gotten past this issue completely, and I'm so incredibly grateful for her being willing to hear me out and listen to my perspective with an open mind.
I'm a big letter writer. It helps me to formulate my thoughts into words and to clearly express what I'm wanting to say, and I find I'm much better at communication in writing than I sometimes am in person. Further, given I fully believe that once you embrace your own insecurities, it's difficult for other people to use them against you, I want to share part of this letter and my experiences. I've omitted some names for privacy reasons.
This letter is to convey my concerns regarding my recent office visit. First, I want to thank you for the care and treatment that you have provided for me, and I appreciate working together to obtain the best possible care. Secondly, it is within this working together effort that I am addressing the basics of why I feel my concerns need further attention for a solution.
When I first discovered Dysautonomia and went to Wardenburg at CU Boulder requesting a referral, the nurse practioner wrote in my medical records that I had “concerns regarding dysautonomia,” and requested a referral, but she questioned a “psychogenic component,” which basically reads: the patient thinks she has this neurological disorder — I’m tolerating her request to be seen, but I really think it’s all in her head. Please do note that I was correct about having Dysautonomia. It wasn’t all in my head, and I have a letter from my former psychiatrist stating I do not have an anxiety disorder or any mental illness. Dr. Afrin’s notes agree with this assessment as well.
In June 2016, I went to Wardenburg again because I’d had oral thrush since May 2016, and it wasn’t going away. At Wardenburg, I had to see a different doctor, as my doctor was out that day. This doctor, also, did not believe me that I had oral thrush. So, she made me wait an hour and a half while they did a culture, which came back positive for yeast. Feel free to refer to my medical records stating, “Patient has white coating on her tongue. KOH positive for yeast.” Please also note my hospital discharge summary, after Stevens-Johnson Syndrome, from July 2016 where they listed issue “4. Oral thrush. The patient was initiated on IV as well as p.o. antifungal,” and I was discharged to complete a 10-day course of oral Nystatin. These two treatments were after I had already done a Nystatin course in June, which didn’t eliminate the problem, and even after the IV antifungal and 10-day treatment, I still needed Diflucan. This yeast problem regularly re-emerges.
I am again having my symptoms questioned and being told that because I’m trying to improve my quality of life by doing research on my symptoms, utilizing reputable medical journals and sources, and requesting to try treatments, that equates to cognitive distortion. I have these symptoms. I am trying make the best of my accurate reality. If I don’t do the research, I still have the symptoms, day after day after day. Living in denial is not an adequate coping mechanism, and recognizing reality, as it accurately exists, is not catastrophizing, that’s having a problem and asking for help. Acknowledging a problem and asking for help is a healthy way to tackle a problem, and yet I’m told that I have “anxiety” because of my commitment to gain any small respite to perform daily activities? That’s not anxiety, that’s having real problems, asking for help, and being invalidated, while simultaneously being told I’m imagining the problems that I can objectively prove exist. Patients being told they’re imagining real physiological medical problems is how doctors create psychiatric problems that need not exist by making patients doubt themselves.
I do respectively hope that we can get past this negative experience during my last office visit. I have to say that having you, of whom I am putting my trust in to provide for treatment, take issue with my long-standing skin diagnoses, and tell me that I’m making them out to be worse than they are due to my allegedly irrational perception, when I am not, is upsetting. Accuracy is one of the most important things to me, and I think you are well aware of this fact. It took me a long time to find a doctor I felt I could trust and who would listen and take my symptoms seriously.
The problems with my skin are a source of daily annoyance and frustration. It is time consuming to make the best of something that you can not control, and regardless of how minor they seem to you, that does not mean they do not greatly impact my quality of life. I would challenge anyone to try putting make-up on while their skin flakes with every touch for twelve years, and then casually accept that they are okay with putting up with this problem daily for their entire life. I cannot control nearly anything about my body. I cannot control the bleeding, I cannot control the fatigue, I cannot control my reactions to shampoos and makeup products, I cannot control the itchy skin or how much or how frequently I sweat, but the one thing I sometimes had limited control over was my skin. I never had hormonal acne until I got an IUD, and now that adds to the already existing inflammatory skin issues. Respectively, all I’m asking is for help in decreasing a few symptoms that yes, while superficial, do matter, especially for someone who lives with a multitude of random symptoms that jump out regularly.
You asked me about my relationships. Have you tried dating with skin that flakes off and randomly is red and irritated and overly oily, another thing you can’t control? I assure you, people are extremely judgmental and superficial. They do judge you. And, when you’re also a person who, by necessity and no fault of my own, has to be a “picky eater,” and are therefore considered high-maintenance by default, you don’t also want to be the person who has flaky, red, inflamed, and irritated skin, which, by nature, people think they’re going to catch from you or that the problem stems from a lack of hygiene, while you also have new-onset acne, and you’re in your thirties, which people judge you for, too. I had one male tell me, when I arrived for our first date, my nose was “so shiny he could have used it for a mirror.” I had just used an oil-absorbing sheet not even 15 minutes before, as my skin’s excessive oiliness is something I’m self-conscious about, and clearly, I’m right to be concerned – because people are judging me. It is discouraging that you feel I’m irrationally perceiving issues to be worse than they are, but I am not.
Some examples of the constant daily skin problems that I endure, and that others take for granted, are having to use an exfoliating sponge and being unable to get my skin to stop flaking, no matter what I do. Often, I have to start my makeup routine over and over because the first two times my skin was flaking, and the third time I randomly start sweating. People point out to me that I have red bumps all over my legs, “fire red” as my dermatology records describe the keratosis pilaris, as though I’ve never noticed them. I painstakingly put time and effort into making my skin look normal and presentable.
I trusted you enough to tell you the reality of how much effort I have to put into creating this illusion that my skin is like a normal person’s and doesn’t have all these weird problems, only to have you not believe my reality and proclaim me of catastrophizing and having an anxiety disorder that I do not have. After having weird symptoms for over a decade that were questioned time and time again that were physiological problems that needed treatment, telling me my reality isn’t what it is, and that I’m not being accurate, is truly one of the most disheartening things you could have done for my medical treatment, and I feel it is important for you to know this information.
Again, I want to express my appreciation for the care and treatment that you are providing for me and for working together to find the best possible solutions.
While it is probably human nature to be judgmental, there are many times where I wish people could experience my symptoms, even for a few days, just to know what it's like, and maybe they'd develop even a little bit of empathy. Words do matter. What you say to people matters. Words can cut deeply, to the core. Watching and listening to how people react to things you cannot control is likely a good way to distinguish between the people worth having in your life and the people who aren't deserving of your time and effort. In the meantime, if you ever need a mirror, my nose will be there for you.
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