The Side Effects Doctor's Fail To Mention


When talking to someone new about what it's like living with a chronic illness it's overwhelming. There would never be enough time to completely explain to a healthy able- bodied person what my illnesses are and what it's like to live with them. I have Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome and Endometriosis. Describing just one of these illnesses would be a challenge.

When I meet new people curious to know more, I'm usually asked the same questions. Whether they be doctors, nurses, family or friends, they almost always want to know what my symptoms are. To which I then start going down a mental list of dosens of symptoms that now impact my life every day. Although it's very important to know this, I feel that discussing the symptoms is only scratching the surface of what our lives are like. It runs deeper than high heart rates, low blood pressure, decreased cerebral blow flood, crippling muscular and joint aches, migraines, severe pain, digestive issues, dizziness, fatigue, fainting (just to name a few). We learn to decipher our body's code and figure out when we need to take medications and how much. Sometimes dealing with the physical side of an illness is the "easier" part. It's the psychological effects that the doctors didn't warn us about when we're diagnosed that can sometimes be the hardest hurdles to overcome.

Living a life with chronic illnesses means a life filled with compromises, limitations and isolation. It's about being overwhelmed all the time. Not just by the big obvious changes but also the little daily adjustments that are now a permanent fix in your life. Living with POTS now means that you can no longer stand up to shower because you'll lose consciousness from the blood pooling and extremely low blood pressure. It's about leaving thirty minutes earlier than you used to because you now have to cater for unpredictable breaks that your body now needs because it's too weak and your heart rate has risen triple its resting rate in the hundred metres since you've left the house. You now struggle to go to shopping malls because the harsh bright lights bring an onset of visual disturbances and migraines. It means losing a vast amount of friends because they didn't understand why you'd changed and could no longer be as present. Its about becoming the unreliable person you swore you'd never become because you never know if you'll be well enough to withstand leaving the house. It's about quitting passions like playing sports because now you can't even run to the tram stop without risking unconsciousness. You may also have to drop out of school or University due to your brain not being able to retain information like it used to. You'll have to compromise on new career paths and discover new hobbies which are within your limitations.

Having a chronic illness is about numerous plans being postponed because you're never well enough to commit to them. It's about developing anxieties that leave you riddled with unnerving thoughts about being in public and having symptoms flare up or about the constant discomfort you'll be in while you try smile at the person you've been longing to catch up with. It's about constantly fighting hundreds of battles with your mind and body every single day. It can mean taking more medications than your grandparents do. Your grocery list now consists of medications, Gatorade and anything with high quantities of salt. It's about constantly justifying why your sitting in designated areas for disabled people or getting disability benefits when you don't look sick to others. You'll begin to look back and struggle to visualise a time where you didn't feel uncomfortable, in pain, anxious and depressed. Chronically ill people feel constant guilt for not rising up to old expectations people made for us, for forgetting to message you back because we were unable to get up that day and for not being the person we knew we could be.

That's something I struggle with daily, the guilt that comes with letting down the ones you love and learning to try understand why you're still riddled with guilt even though you know it's completely out of your control. Living with chronic illnesses has overturned my life and it now doesn't look like anything I'd envisioned for myself.

Although we may not be living the life we dreamed of, our illnesses did bring us something that can take years and years to develop and manifest for others who don't go through what we do. Through learning how to battle and make peace with our illnesses, we conjure up a strength which you just don't see in our peers. It teaches us how to be patient, resilient, compassionate and understanding of others in groups that are also discriminated against. It ignites this fire within us to better ourselves in ways that may not have crossed our minds before this hectic journey. We're forced to self-evolve at a more rapid rate than most. We have so much time bedridden to reflect and it's what we do with that reflection that alters our way of thinking. At times we may dwell on the life we missed out on, however this just motivates us to find the strength to get back up. We become self aware and learn more about ourselves than we ever had before.

I have these illnesses to thank for the woman I am now and for bringing me close to other chronically ill people, who are in fact the most remarkable people I've ever met. Although losing a magnitude of friends felt harsh and unkind in the beginning, it created room for when I found others like me. The sense of community and ongoing support from other chronically ill people will help you find the drive to keep going. This illness may seem cruel most of the time but it shows you how you can find the silver linings in any situation.

Had I continued on the path I'd scoped out prior to becoming ill, I would have continued with a circle of people who unbeknown to me at the time, would never have the level of compassion and respect that I deserved. It's given me the strength to believe I can get through anything else thrown my way. I've now discovered who I am as a person, where I want to go in life, what kind of people I want to accompany me through this journey. I've learnt how to be strong when you have no control, how important it is to be patient and understanding, how to find the confidence to overshadow the insecurities. And most importantly, in my opinion, I have made lasting friendships with the best people you'd ever meet.  

Caity's Instagram: somethingaboutcaity

Holly Gouldthorpe