When I started this blog in January 2017, it was to inspire other people to live anyway. It was also a therapeutic forum for me. I started the blog after I agreed to start biologic medicine through infusions. All other treatments failed and the biologic’s were my last hope of achieving long-term remission. However, I still felt like a failure and was devastated. This blog site was my ability in bring positivity to others and to myself.
Since then, I have received many messages from inspiring warriors of how this blog has supported them. I have over a thousand followers and have reached over five thousand readers. I would say that I have accomplished my goal. Well of course I have a new goal now. I would like to encourage autoimmune disease sufferers to come out. Come out of the chronic illness closet. Many have come out to me although, they have not come out to their family, friends and/or employers. Many continue to suffer in silence.
Being chronically ill definitely has several negative connotations. We are discriminated against. We are often judged harshly. People need to see the illness in order to believe it but then when the visible illness is uncomfortable visually; they no longer want to observe us. Invisible illness is not recognized. So we are stereotyped as scammers, liars and frauds. We are looking for drugs, sympathy, and attention. We are lazy and embellish often. We are not honest. We don’t want to work. We want to collect a free pay cheque. We have mental health issues.
Some of this could be true, but most of it is bullshit. Those of us who have the pain tolerance and the stamina to work – Do. Those of us who cannot tolerate the pain, may need a higher dose of pain killers. Many cannot get out of bed and if they are parents, may have to parent from bed. Many of us cancel plans often and then there are many of us who will deal with the pain in order to visit others. Many chronic illness sufferers have dual diseases and other health complications. We cancel plans often, we go to bed early. We leave events early. We do what we have to do to survive this life while being ill. Everyone copes differently.
I hear from many people inspired by this blog and my self- disclosure, “well don’t allow your illness to define you”. I do agree to this – partially.
Don’t let your disease define you, but acknowledge it, label it and disclose it. I am a firm believer in accepting it, acknowledging it and building a relationship with the disease(s). Unfortunately, without a wish for it, we became sick; our bodies for some reason are at constant battle with itself. Why hide that? You have done nothing wrong and this certainly is not your fault. There is nothing to be ashamed of. Hiding it only gives the disease power. Acknowledging it, fighting it and living with it, gives YOU the power. This disease is apart of you now. It’s like an unwanted “Santa exchange gift” that unfortunately you can’t re-gift. And… in all reality, we wouldn’t wish an autoimmune disease on our worst enemy.
I found that once I accepted it, and started building a relationship with my diseases, I noted that my body spoke to me and even educated me on what it needed. Even though I push my limits to the very edge with yoga, work and socializing, I still listen to my body and take the break that it needs. I rest when need to, I cancel when I need to and I ensure that I do not do anything to myself that can cause significant pain. I ensure that those in my life, including my employer are aware of my diseases, and my disabilities. Because of those diseases there are other risks attached. I could have a heart attack or stroke (these are my risks – 40% chance) at my desk or at the yoga studio. If I didn’t disclose my illnesses and my medications, no one would be able to assist me to ensure I receive safe interventions. If someone in my circle does not believe, or cannot show empathy or understanding. I do not take that on. It has nothing to do with me. I remove them from my circle. I ensure that I am well supported, not only in my personal life but at work as well.
I have to say that I am fortunate to be well supported in both sectors of my life. I do recognize that not everyone has that. I also recognize that it is not easy explaining your chronic illness to others. However, I firmly believe that hiding the disease has significant implications on your physical and mental health.
I encourage you to not be defined by your illness but to accept it, embrace it. Educate yourself and others. Form a supportive network (size doesn’t matter). You may just be surprised by who will come to the table to support you. Being chronically ill is a great challenge. It comes with many facets but you don’t have to do it alone.
I encourage you to keep fighting (whatever that looks like for you) and to live anyway.