Dealing With Invisible Illness Doubt

This is going to be one of my longer posts, but I think it will be a worthwhile read for a lot of people...


Once upon a time, over a decade ago, I had my first run-in (quite literally) with invisible illness: post-concussive syndrome, caused by an automobile accident. I recently learned that the MTHFR mutation is specifically connected to poor recovery from concussions! I had previously considered this event to be very significant and life-altering, but unrelated to anything MTHFR. Now, all of the pieces of this confusing and traumatizing time in my life are slowly coming together. I may have to do a full post just on concussion recovery as it pertains to the MTHFR gene, but I'm going to focus on invisible illness doubt in general in this post.


While everyone who was in the car with me experienced some unpleasant muscle stiffness in the days to come, my experience was completely different. I was suddenly crushed by debilitating migraines, dizziness, confusion, and nausea. In the months to come, my symptoms morphed into more persistent depression, personality changes, compromised memory, and cognitive decline. I transformed from the cautious and conservative soon-to-be class valedictorian into a sickly, impulsive, self-destructive, struggling-to-finish-high-school disaster. By the time I fully woke up from this trance-like state, my life was nearly unrecognizable. If all of that wasn't awful enough, the overall suspicion, cynicism, and general lack of support and empathy I was met with was the most crushing part. Of course, I did have some people in my corner, but they were the exception and not the rule.


I was actually fortunate enough to have formal medical consensus regarding my experience. Highly educated and respected specialists all agreed and confirmed my diagnosis through a variety of tests, including MRI imaging, blood work that reflected tanked brain neurotransmitter hormones, and a range of motor skill and cognitive evaluations. Was any of that enough to convince the nay-sayers? Nah. I was just attention-seeking, dramatic, looking for sympathy, a bad person, etc. There is something in human nature that makes us highly skeptical of illnesses or injuries that are not outwardly and gruesomely visible. Some of you may be aware of my battles with MRSA that began occurring several years later. While that experience was also confusing and traumatizing in its own right, the one redeeming factor was that it was outward, it was ugly, and it was undeniable. For the most part, I was surrounded with far more love and support because of the visible nature of that illness (the long, invisible recovery was less understood). Still, the contrast was astounding.


The MTHFR mutation can cause a diverse manifestation of health issues, some visible and some invisible. I have personally experienced both sides of this coin, as I'm sure many of you have as well. While I have battled the stigma of invisible illness in a handful of instances, none were as brutal or met with as much criticism as post-concussive syndrome, hence why I used that anecdote as my primary example. At the time, I had no understanding of what I was going through. I was not familiar with the concept of invisible illness or why anyone would question my experience. I did not know what I know now, so I did not handle it how I would handle it now. I now see validating and empathizing with the visible and, especially, invisible illnesses of my readers and clients as a very important part of my mission.


In order to properly address someone who is doubting the validity of your invisible illness, I think it's important to assess which of the following categories this person might fall into before responding. More than one category may apply. People are diverse, and there are multiple motivations behind why someone might antagonize you (purposely or unintentionally).


Read on for my top 5 reasons behind invisible illness doubt, as well as how to best respond:


1. They lack empathy due to lack of experience.

Some people may truly love you and want the best for you, yet still lack any kind of internal framework for what you're going through. Some of these people may still be able to practice empathy, despite struggling to understand. Others may struggle more to empathize due to their lack of understanding. Maybe they've never experienced any health problems that have shaken them to the core, let alone ones that operate incognito. They may unintentionally minimize or doubt your symptoms without even fully realizing what they're doing. At the end of the day, lack of experience is not an excuse for a lack of empathy. Those who love you should try their best to understand, even if they personally have no frame of reference.

How to respond: Stress the need for trust, understanding, and empathy. Explain to them that what you're going through is really difficult and that doubting or invalidating that makes a painful situation excruciating. Ask them to work through the discomfort of placing themselves in your shoes and imagining your experience. If they love you, they will try their best. Unfortunately, this angle does not work for nay-sayers who don't love you. In that case, reference #4.


2. They consider themselves to be rational and only trust "the science."

Ah, the rational, scientific ones. So rational that, if your experience is not backed by the current scientific consensus, the only reasonable conclusion is that your experience is invalid - not that science hasn't yet caught up with whatever your experience is pointing to (sarcasm intended). Our understanding of science and medical consensus is constantly evolving. Even in the traditional medical community, some of the most brilliant scientific minds I know acknowledge this. It wasn't all that long ago that children sang "DDT is good for me" on television commercials and physicians recommended their favorite brand of cigarettes in magazines. It's hard to believe, considering what we know today, but that's what happens when you place too much trust in scientific consensus. Perhaps, we don't understand much about something like fibromyalgia today, but rather than invalidate the experience of so many people, leaving room for future scientific discovery would be a better option.

How to respond: Remind your rational friend of these embarrassing and shocking bloopers in our relatively recent scientific history. Bring to their attention that our understanding of "the facts" is ever-evolving and never fully complete. Suggest that they consider placing more value on anecdotal experience and leave some room for the humility of the unknown. It is no fun to be suffering from a condition that science can not yet explain. Ask them to practice some empathy with you and acknowledge that, while science may not yet be able to explain your condition, that doesn't invalidate your experience.


3. Your invisible illness inconveniences them in some way.

Let's face it, accommodating for illness can be a lot of work. Many people in my life have gone to great lengths to accommodate my "special needs." However, when said illness is invisible, some find it easier to use that invisibility to invalidate and avoid the hassle of change...aka silencing you to benefit themselves. I would classify this group as people who either do not truly value or care about you or are so self-centered that they may be dangerous to be in close association with. Story time...before I was officially diagnosed as having a wheat and cow's milk allergy, I was struggling with serious gastrointestinal distress after eating. My symptoms progressed from mild discomfort to being doubled over in pain, sometimes to the point of vomiting (not so invisible, after all). I found that avoiding gluten and dairy alleviated my symptoms until I could get official testing. A particular person in my life at the time did not believe my symptoms were legitimate and would angrily coerce me into eating foods that made me experience the above symptoms, all the while saying it was all in my head. It eventually became obvious that the real reason for his anger was that he liked things the way they were...pizza nights, nachos and cheese, ice cream...my condition threatened that, so it needed to be invalidated, even if I suffered greatly in the process. In other situations, people may not actively try to coerce you into making harmful decisions, but may still be resistant to acknowledging the validity of your experience because that would require accommodations they straight up don't feel like making. Change can be inconvenient or downright hard, but will be supported by those who love you.

**Yes, I'm well aware of how abusive that anecdote sounds/was. The dynamics of abuse is not something we'll deep dive on this blog, but that little snippet is a great example of one of the motives behind invalidating invisible illness!

How to respond: Depending on the situation, you may need to remove yourself from this type of relationship dynamic. If that's not necessary or possible, setting firm boundaries is of utmost importance. Make it clear that you must make certain changes for your own health, regardless of whether the person in question is on board or not. You are not requiring them to live by your rules, but it would mean a lot to you and your relationship if they would at least support you. In broader social situations, being self-sufficient and well-prepared also helps. Always show up to gatherings with your own snacks or whatever it is you may need and quietly take care of business. Drive yourself if you need to discretely end the night early. Most people will understand and many will bend over backwards to help you. The ones who give you a hard time expose themselves as not having your best interest at heart.


4. Haters gonna hate.

This one may be a bit of wet blanket, but it must be said....some people just don't like us. Their antagonistic attitude towards your invisible illness might be due to more of a personal issue within themselves than anything related to your actual illness. They may come against you no matter what it is you're facing. Your illness could be proven and visible and it may still make no difference with this type of person...haters gonna hate!

How to respond: First, I recommend trying to bridge the gap with this type of person. Apologize if you have wronged them in some way. Try your best to establish good relations. If their attitude has nothing to do with anything that is fixable on your end, your only option is to distance yourself from them. The only two things I don't recommend doing are to accept their abusive treatment or to internalize any of it.


5. They feel disempowered in their own lives, so they disempower others.

This one is a theory I've been bouncing around in my head. Unfortunately, we live in a culture of silencing victims. While we are making great strides towards better communication and accountability, we have a long way to go as a society. The statistics vary depending on the source, but a staggering number of people are sexually abused before and into adulthood. Often, perpetrators are protected, while victims are silenced. However, this is only one type of abuse. It is possible to be disempowered in countless ways that can have devastating long-term effects. Some people who experienced being silenced in some manner eventually turn into advocates, fighting to give others a voice. Others learned to survive by burying their pain and almost violently demand that others do the same. Their thought process may go something like this..."No one cared to hear or believe me when I cried out for help, so why should I hear or believe this person? I had to suck it up and so should they." It's certainly a misdirected anger, but it's a reflection of their own pain and unhealthy coping mechanisms.

How to respond: If you suspect this may be the case with someone close to you, I suggest attempting to open dialogue with them. Ask them if they were ever in a situation where their pain and experience was invalidated. See how they respond. Be gentle about it. It could be an opportunity to make them feel seen and heard. Once they develop their own voice, they may just become more comfortable with empowering others to develop theirs. You could end up helping to create an advocate!


How has invisible illness affected your life? Have you dealt with invisible illness doubters? How did you handle it? Tell us about it!

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