I’m taking part in WEGO Health’s Health Activist Writer’s Month Challenge
Day 11 & 12 #HAWMC – Write about your favorite health iPhone app? and If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?
I have some thoughts that link the Day 11 & Day 12 prompts together, so this post will address both.
Of course, you can’t remember everything, especially if you are gifted with brain fog as a side effect of your illness, in which case you should write everything down in a durable notebook designed for this purpose. Why durable? Well, if you’re like me, and one day you may well be, you’ve been ill for around 23 years (longer if you add in the untreated depression). That means you may have been on different medications for 23 years. Believe me, after the first 5 years, it can all get a bit foggy, especially if the medications in question are psychoactive ones and have a whole range of unpredictable side effects that may have precipitated a batch of new problems in addition to the condition they were designed to treat. Twenty three years later when you’re trying to map the course of your illness(es) or trying to gauge the safety (or point) of trying a new medication, it really helps if you know you’ve tried it before.
Which brings me to reconstructing my health history. I was introduced to a fairly good (I won’t say great because it has limitations) web-based platform for doing just this, called PatientsLikeMe.Com. The purpose of PatientsLikeMe (PLM) is, for the patient, to keep a comprehensive health, medication and symptom history, and compare notes with your health condition peers. The benefit, I’m guessing, for the companies that sponsor the site and perhaps the eager young researchers who monitor it is to get unrestricted access to a comprehensive source of data regarding health conditions and medication outcomes and side-effects. If you don’t like the idea of others sifting through your data, this is not the place for you. However, if you’re like me, and you’re rather keen to have a peer or an eager young researcher say ‘A-ha!’ and point out an insight into your health conditions, then it’s not a problem. I’m still waiting for the instant message on-site with the A-ha, by the way!
I don’t know if PLM has an iPhone app, as I don’t have an iPhone. I have an Android and there isn’t a PLM app available on the market there, as far as I can tell with my addled brain at 4am. However, the web-based platform is well-suited for my purposes: reconstructing my health history with what I do have available. I have periods where I kept hand-written notes of meds (not dosages or side-effects unfortunately), others where I kept surgical/procedure reports and lab work, others where I kept emails that potentially have conversations about meds and test results, and other times when I was too busy surviving to keep much in the way of records.
Why is a record so important now? I’m at a stage of review, where I’m trying to pick out useful information from the pieces of my past. I’m always trying to address the problem, once and for all, of a doctor saying, “Why don’t you try medication X”, and my reply, “I’m sure I tried medication X, but I stopped taking it, and I think there’s a good reason why I stopped taking it.” Like perhaps I started sleepwalking, or had total memory loss, or I don’t know, became psychotic. But it’s hard to remember when you don’t keep records. So, my advice to someone starting out on a journey to recover your health, and I pray for you that it won’t take 23 years, is to remember everything, and short of that, write everything down. I recommend the durable notebook because you’re more likely to keep that at home, rather than on a mobile phone that you’re going to accidentally lose and have to start all over again. In fact, keeping it in two places: a durable notebook and a web-based platform like PLM is a good idea.
Why do I not give PLM my wholehearted backing? Judging from a few emails I shared with their support people, they’re constantly working on the product, but at the moment, I do find it fairly rigid in what you can do with it. For example, the data collected around Sjogren’s Syndrome seems to be strongly linked to the dry eyes and dry mouth medications and treatments, and I have to go digging through the site to find other people who might have experience with the systemic manifestations of the illness. I find the benefits of ‘Patients Like Me’ rather limited by the search functions of the site, which means to me, it’s basically a diary of my history. The potential of reaping the benefits of the combined history entered into the site is just not available yet. You can dig around and find individual profiles that might give you one viewpoint, but it’s not really leveraging the value of that combined experience.
A site that seems to dig deeper into analyzing the data on hand (which is the only reason I’ve used it so far) is CureTogether.com. Here is their breakdown of the symptoms that visitors attribute to Sjogren’s syndrome: https://curetogether.com/sjogrens-syndrome/symptoms/ I find this kind of breakdown fascinating and validating, as it gives you a real feel for what you’d expect if you were diagnosed with Sjogren’s. Here’s their graph for depression: https://curetogether.com/depression/symptoms/. I’d love to find a site that combined both the history and analysis functions that these sites seem to handle separately. If you know of such a place, I’d love to hear about it.
So, to address the other part of this post: going back to the day of diagnosis. Well, it took me 12 years to get my Sjogren’s syndrome diagnosis, so I’d like to go back to the first few months after the food poisoning/giardia episode that triggered the illness in 1990. As I’ve alluded to above, my first advice would be to remember everything, or rather, write everything down. I’d tell myself that I wouldn’t understand the importance of it now, but one day it would matter.
The next most important thing would be this: don’t be a passive participant in your health care. The doctors may know a lot, but they don’t know your experience of your health. If you believe something is wrong, and the doctor can’t provide evidence as to why your belief is wrong, then stand by your guns and keep asking questions. If a doctor isn’t going to work with you, or worse, minimizes your experiences or even professes to know what you’re feeling, e.g. “Patient doesn’t appear to be in pain”, then it’s time to get a new doctor. Your part of the job is to give honest feedback of your experiences and the effects of medications as you experience them. You will experience your illness and each medication differently to everyone else and your different is not wrong. If your doctor won’t accept that, then it’s time to move on.
Strongly related to the previous advice is this. Don’t put on a brave face for the doctor. You may have become accustomed to using your brave face for family, friends, work colleagues and strangers on the street, but in the doctor’s office it won’t serve you. You will end up getting comments like “Patient doesn’t appear to be in pain”. This will be hard to do because you’ve been putting on the brave face for 24 years, but persevere. It will get easier to be vulnerable if you practice it. You’ll also get better at spotting those who will abuse your vulnerability, and you’ll be able to put those people out of your life. But start practising now. Don’t wait until you’re, oh, I don’t know, 46.
Another important piece of advice or you is this. Don’t assume that all medications are benign. The depression you experienced months after starting the pill. That was real. The other side effects awaiting you, the most memorable being psychosis, depression and suicidality – those are real too. It’s not normal to experience those things on a medication. Don’t assume that it’s all you. You’re not as crazy as you think you are. I’ve seen meds do these things to people I love – people whose initial problems were mild to moderate in comparison. It’s okay to say, “No, this medication doesn’t suit me. It may suit 90% of your patients, but it doesn’t suit me”.
I guess this is the last thing I’d like to leave you with, by repeating: You’re not as crazy as you think you are. Have faith in yourself: in your strength, in your heart, and in your integrity. People don’t know how hard you work, how hard you try and how much you put everyone else first. That’s okay. You don’t have to shout it from the rooftops, but know it in your heart, and be confident that no matter how a treatment or a therapeutic relationship (or lack of one) goes, if it doesn’t work, you’ve done your best. It’s okay to be demanding in that it’s all right to ask for the next option, or a second opinion.