Why we need to be aware of undiagnosed invisible illness

I received a new diagnosis earlier this year and I finally feel like I have an explanation for most of my symptoms.  Despite the fact that my physical health is not improving yet, this new diagnosis has made a big positive impact on my life.  Getting an accurate diagnosis impacts more than just our health care, it also effects our mental health, our relationships, and our support network.  In the past, I have been undiagnosed, misdiagnosed, and underdiagnosed, all of which have similar problems.  I want to reflect on this past in honor of those who have not yet received an accurate diagnosis (or accurate diagnoses) and to raise awareness.  Also, I want to highlight these issues around the time of this Invisible Illness Awareness Week, September 26- October 2.  What it really comes down to is validation and credibility, which are crucial for coping with invisible illnesses.

The most obvious problem with lacking an appropriate diagnosis is getting proper healthcare.  And it can really feel like doctors don’t care enough to work with you to really find out what is happening, especially when it comes to conditions they might not be well educated about.  For example, in two instances, I had doctors who seemed disinterested in honing in on diagnosis because they didn’t think treatments would matter.  After fainting during a table tilt-test, I was diagnosed with Vasovagal Syncope and told to consume more water and salt.  I asked about POTS (Postural Orthostatic Tachycardia Syndrome) and was dismissed- with attitude.  This came after a long series of other tests and I was crushed, gave up on doctors, and tried to deal on my own.  It was some time before I did receive that POTS diagnosis from another physician after starting up tests all over again.  Water and salt were not enough to help me through until then.  Now with diagnosis, I can pursue medications and work towards solutions.  It happened again when I asked to be evaluated for EDS (as instructed by a specialist).  The doctor said I already had a Fibromyalgia diagnosis and that they treat both conditions in the same way.  Thankfully, I did get evaluated for EDS and was not diagnosed.  However, if I did have EDS, I could have pursued treatments and specialists specifically for EDS and not Fibromyalgia.  Credibility also comes into play in dealing with doctors and medical professionals.  They may be quick to assume psychological issues once basic medical problems are ruled out.  This can potentially slam the breaks on more involved testing and specialist appointments for health conditions that are more rare or more difficult to identify, all of which prevents access to treatment.  My mom was the one who figured out our way around this credibility issue.  She carries a graphic photo of an oversized tumor that was removed from my chest (caused by the rare Castleman’s disease).  So, the appointment would start with the doctor looking at me and think I was fine, then my mom would show this photo of a very large and tangible medical anomaly, and then the doctor would think twice!  I never thought it was necessary to show that photo, but time and time again it would change the attitude of the doctor.  Without something tangible to show a doctor, it can be very difficult to get access to more specialized testing which could lead to treatment.

An accurate diagnosis can be very healing for one’s mental health and the lack of one is beyond frustrating.  As I mentioned, when a doctor doesn’t find an easy answer, they may be quick to refer out to psychiatry.  This has happened to me twice to be evaluated for Conversion Disorder.  Each time I was still in the middle of going through medical tests.  Conversion Disorder and other so-called psychosomatic disorders are usually diagnosed based on exclusion.  So, all medical causes for the symptoms must be ruled out by testing before this kind of diagnosis can be made.  I was never diagnosed with Conversion Disorder because each time psychiatry did wait for the medical tests (long waits due to waiting for specialists) and each time medical tests did explain my symptoms.  As anyone one with invisible illness will tell you, it is devastating to have a medical professional suggest that your problems are in your head and it feels like they are implying that in some way, you are responsible for it.  It causes you to question yourself.  Are my symptoms real?  Is this really happening?  This sort of thinking is hard on self-esteem.  I always knew that what I was experiencing was real physical illness, but these moments where I tried to be open to what those doctors suggested, to question myself, filled me with a temporary hopelessness.  I think it is important to be open to explore mental illness and to break beyond stigma, but that is not what this particular issue is about.  I know so many others with medical problems have been where I was and many do get misdiagnosed with psychiatric conditions.  Depression and anxiety are common misdiagnoses, but can also be comorbid conditions, further complicating things.  It is crucial to get thorough medical testing.  Getting properly diagnosed was extremely validating and affirming for me.  I am able to focus my mental efforts on research, seeking treatments, and living my life, rather than wondering about what is happening with me.

My family and friends can surely see the difference, too.  Invisible illness always has the potential to add strain to a relationship, especially if it is so invisible that some don’t realize its impact.  For years I just had a Fibromyalgia diagnosis (despite other additional symptoms), and unfortunately, many people in my life focused on the success of high-functioning folks with Fibro, failing to realize how crippling it can potentially be.  I am a driven and confident person.  I always felt like my loved ones saw that and expected great things from me.  I would try so hard to perform, do well at work, and reach goals.  Time and time again I would run myself into the ground and have to build up again slowly with time.  I would hear things like, “the doctors say you are fine, so you can do this,” or “everyone gets tired- it’s called being an adult.” It just caused me to get in a cycle of pushing passed my abilities and burning myself out.  These were all loving and well intentioned people just hoping to spur me on.  Friends, where do I start with friends?  I would go out back when I was feeling a lot better than I do now, but still had health issues.  I would just go out for a short while and leave quietly, so I don’t think anyone realized I had trouble with stamina.  I would get invited to outings and have to say no, but I didn’t know how to explain that the outing would be too hard for me.  I didn’t have a name for it-  I just knew I wouldn’t feel good.  I’ve lost so many friends because I didn’t know how to tell them I just couldn’t keep up.

Now I have a language to explain my challenges to friends and family- I have a way to make my conditions visible to them.  I can share an article or send a link to explain something I didn’t have words for before.  I have credibility because doctors gave me labels and now the people in my life don’t have to speculate.  I find it easier to explain my limits and ask if we can adjust things so that I can participate.  I have chosen to share about my health on social media so that friends and family no longer have to wonder about what was going on with me.

The internet is a great place for support in general- there are many amazing groups, websites, organizations, and blogs dedicated to a variety of conditions.  After I received a new diagnosis, I went on a whirlwind of finding support online and it was there!  I found people who went through the same things I did.  I found articles and resources.  I found tips and suggestions.  I felt so comforted to find this community that I belonged to, people who empathized naturally.  Even some rarer conditions have online communities.  However, when you still don’t know what condition(s) you have, you don’t know where to go.  I certainly didn’t know where to look and found groups afterwards.  While there is some support for the undiagnosed, mis diagnosed, and underdiagnosed, this is an area where we could truly benefit from some growth.  This group can especially use this online support because lacking a correct diagnosis has probably strained their other relationships.

While my main point here is to raise awareness for the undiagnosed, misdiagnosed, and underdiagnosed, I can’t go without including an area of my life that went unchanged before and after my new diagnosis.  My then fiancé and now husband was there with me loving me when I was still out there dancing and is still with me now.  He stood by me as I struggled with fainting more and standing less.  He used to endearingly call me a shark because for a time I would try to prevent fainting by constantly keeping moving when I was upright.  He always kept me smiling and has given me so much strength.  It is support like his that helped me to push on and to keep seeking answers.  I’ve also had tremendous support from my family, especially my mom.  I can’t imagine how I could have come this far without their support.  There are people who will stand by you know matter what, even if they don’t understand.

I’m mindful that on many levels, I am privileged to have multiple diagnoses from reputable doctors.  I may have more diagnoses to go (still need some other work ups), but I’m glad about where I am now.  It took me years to get these diagnoses and more doctor visits than I can count.  I think about the times I gave up on doctors and tried to get by on my own.  I wonder how many others have been through that and never tried again.  I think about how many times my mother has driven me to appointment after appointment.  I wonder about those who don’t have that support and transportation.  I think about the people whose posts I read online who are desperate for answers and for relief, yet find neither.  I wonder when their time will come and what their lives will be like in the meantime.  I wonder when the undiagnosed will get the validation and credibility they deserve, because they know they are sick and it is real.

Let us keep talking about this.  Let us offer friendship when we hear of someone who always feels ill, but doesn’t know why.  Let us listen seriously to the young person who does’t have energy for school or the new mother who can’t lift her baby.  Let us speak with kindness about mental health issues and make it safe to talk about them without stigma looming above.  Let us raise awareness and work towards being a part of a validating and supportive community.

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