How Falling Apart Taught Me to Care for Myself and Be Honest About My Health
Out of Sight, Out of Mind
I have been incredibly fortunate to have been able to work throughout most of my adult life with chronic conditions. Hospital admissions for me have very luckily been kept to a minimum. Academic opportunities have without doubt been missed, as ironically I wanted to be on the diagnostics side, rather than be the diagnosed. However, I was still able to forge a career helping people and pursue my creative passions. While I didn’t get to where I am without struggle, I know there are many people with the same conditions who are unable to work and my compassion for them is huge.
My battles reached a peak for me after a significantly difficult period in my life. Many things seemed to simultaneously fall apart; my health deteriorated as a result and I retreated. With my usual stubborn pride as a caregiver, I kept most of it to myself in a bid to not burden others, but it led to a fall that was a nightmare I thought would never end. That was over two years ago and I’m only just starting to feel I’m reaching a point of stability.
I was incredibly vulnerable at times and there were periods I was bed-bound, times I cried uncontrollably wondering what I would do if I couldn’t get to the kitchen to microwave a meal, or even just to get to the loo. Bathing at one stage was more of a luxury in comparison to the absolute essentials needed to survive, as I was alone in a top floor apartment. Luckily and equally frustrating for me was that each day was unique and the presentation of symptoms wasn’t completely consistent.
Eventually I reached out and was met with very little empathy, so I retreated again and watched helplessly as my life fell apart. My mental health nose-dived and I started to feel overwhelmed with feelings of anger and resentment at having tried my utmost to be there for everyone else, prior to my own struggle. I was experiencing a breakdown and I felt desperate, alone and wanted it to end. I couldn’t understand why no one was there and it bothered me for what felt like an eternity.
The cognitive impairment had become so bad that I welcomed acute anxiety to keep me alert enough to keep up in conversation. I would latch onto specific words and try to piece together sentences. I could no longer read more than two lines of text, which was incredibly disheartening as a writer. Anomic aphasia (word retrieval failure) became more of an issue to hide while speaking to people, which created further anxiety. Battling syncope (loss of consciousness) was a daily struggle, as was constant unbearable pain. I felt like I was imploding by keeping everything in, but I knew I was risking my job and home by being completely transparent as I had experienced anything but support previously.
After some time, I tried to reach out for help everywhere I could, socially and professionally, as I was frightened I would lose everything, but there seemed to be nowhere to turn. I was too unwell to realize I was seeking it from the wrong people and places.
After months of immense struggle, things did start to improve as my outer circumstances eased. I started to socialize more, but I didn’t realize I still wasn’t facing my own demons – instead I was avoiding them and doing all I could to escape the truth.
When I felt better, I would convince myself I was on the path to remission and do further damage by pushing myself too hard and doing things I knew were bad for me long-term. I made excuses to leave events early rather than tell my friends the absolute truth. I went to bed really early prior to any event or someone coming to visit, did my makeup and smiled through any pain.
I did myself absolutely no favors hiding the severity of it but I was determined not to have someone look at me as if I was an attention-seeker/hypochondriac ever again and it felt easier to play things down as I wrongly assumed people would give the same reaction.
Unsurprisingly I fell again, though this time my mental health impacted me more than the physical symptoms. The difference this time was that I finally faced up to what I wasn’t dealing with. I was lying to myself and not being completely honest with the right people. Due to previous attempts being met with little concern, on giving what I thought would be enough information to spark worry, I shut down completely. I thought if I outright told them I needed support they would think I was either an attention-seeker or a drain, so instead I tried to be supportive of their problems while I sat alone with the full extent of my own.
I didn’t realize I was allowing myself to be insignificant, to be a lesser person by not being bold with my own truth. By not being completely honest, I was unable to properly screen those who had little empathy for me and therefore did not deserve a place in my life. Though the act of being required to spell it out, from the information already given, allowed me to do just that.
No one should ever feel they have to lie or withhold in order to have deep, meaningful relationships with others, and feeling you have to is not a good sign.
When You Speak Your Truth
One by one I mentally shut doors on relationships that were not supportive and I started to strengthen ones I knew were. I sought out more supportive professionals and I started to tell the absolute truth to those I trusted, as I realized I hadn’t opened up fully to them because of the reaction I had experienced with the wrong people. I also started to stand up to anyone who didn’t respect my boundaries, took advantage of my nature or thought it was OK to be abusive towards me.
I sat down and thought about the severity of the symptoms I was trying to hide from most people and started to really and honestly care for myself. I started to regain a much stronger sense of self and confidence. I reframed what I once saw as fragility and weakness in myself as something that has given me enormous strength and placed me in the position to be of help to others.
At the same time, I realized people generally have difficulty assigning belief and sympathy to something outside their own experience, let alone a complex diagnosis that is largely unseen. I also realized that societal changes have affected the way in which we relate to and support each other within communities; our families and friends are often vastly dispersed. Because of that, I forgave those nearest to me and let it go, while I reserved close space for only those with greater empathy for others and a genuine regard for me.
I have purposely left diagnosis out as I think most of us have felt isolated by the ignorance and lack of support that often comes with an illness that is largely invisible. We have heard that someone’s aunt, dad, friend of a friend, dog had the same thing and they are now cured, which I believe is due to a lack of understanding for fluctuations of severity and individual symptomatology. We have often had people draw comparisons to issues that share very few similarities and minimize the severity of what we have, and I’m sure most of us have heard the “at least it isn’t cancer” statement. I think these statements more often than not come from well-meaning people, but it’s really up to us to ascertain what is tolerable and who is a real friend to us and who is not.
What I thought was the most horrendous period in my life turned out to be a massive catalyst of positive change. I am no longer hiding from my truth, no longer need the validation for its legitimacy from anywhere but myself, nor do I seek meaningful relationships in the shallow end of the pool. When I need to rest, I rest. When I need support, I am less reserved to ask for it and now seek it from the right places.
Invisible illness has taught me, if anything, to love myself and put my own needs first. I also see it as an honor to be able to use my experiences in a way that may help someone else.
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Thinkstock photo via Soft_Light.