10 Valuable Things I Learned About Chronic and Mental Illness in 2018
As the year draws to a close, I have been reflecting on my life with chronic and mental illnesses. I live with various autoimmune diseases (including lupus and myositis), chronic migraine, a seizure disorder and mental health problems that include borderline personality disorder (BPD), PTSD, anxiety and depression. It is a lot to deal with and it takes a lot out of me. But I get through it. It has been a really rough year, but the good that has come out of it is that it has shown me my strength.
It has also been a monumental year for me. I have been receiving psychological help for two years now and the results are starting to show. I have made major breakthroughs in my therapy this year, and as a result I’m starting to gain control over my psychological issues. I feel that this has also had a positive impact on my physical well-being.
I have been reflecting on what I have learned this year:
1. Not everyone understands my journey, but that’s OK. It can be difficult for some people to understand what you’re going through. If I’ve talked to them about it before, then I’ve done the best I can. That’s all I can do.
2. Self-care is essential, for your physical and mental health. Self-care requires taking charge of your illness and taking care of yourself. Self-care empowers you to fight back and gain control of your illness and your life.
On my bad days, I wrap myself up in a fluffy blanket and binge-watch my favorite shows, with a purring cat on my lap. If I have any energy, I take a long bath and read, while music plays gently in the background. Doing these things are acts of self-care that get me through my worst days.
Managing my illness enables me to take control. For example, I keep a daily symptom and mood diary, write lists of issues I wish to discuss in appointments, set up calendar and phone reminders so that I don’t miss appointments (I’ve missed appointments before due to brain fog!), and keep my MedicAlert records up to date.
3. Living with chronic physical and mental illnesses is a 24-7 emotional and physical rollercoaster. It’s perfectly natural and OK to break down sometimes. Thanks to therapy, I’m learning to ride with my emotions, focus on them and analyze them in my mind. I accept the emotions my brain presents to me and let them pass. I‘m not able to do this all the time, but when I can, it is a great help.
4. Some of the people you love and trust the most will abandon you because of your illnesses. It hurts like hell. When someone you love walks away, you will grieve for them. When you’re ready to, let them go. If they walk away, then they are not meant to be a part of your journey.
I’ve experienced losing people I love and trust many times and the hurt it causes goes beyond words. But I survive and I keep on going. You will survive this pain too.
5. I have had to set strict boundaries and routines sometimes in order to manage my physical and mental health. Some people try to push my limits and break my boundaries because they don’t understand or accept your situation. I try to stay firm and strong.
6. My situation sucks at times and my life is far from perfect. I‘m homebound and usually only leave the house for medical appointments. But I’m alive. That’s all that matters. I am grateful to be alive, despite the excruciating physical and emotional pain I live with 24-7. I’d much rather be shoveling metaphorical horse dung all my life than not being alive.
7. It’s OK to not be OK. No one, not even the healthiest person on the planet can be strong all the time. It is perfectly natural to have days where you don’t feel strong. On those days, you’re recharging your emotional batteries and strength. You will get through the bad days, no matter how dark they may be. You will survive and come through it stronger than ever.
8. Always have hope. If you’re fighting physical/mental illness, you need hope. It is better to hope than to despair.
On your worst days, hope is a lighthouse, beaming brightly in the thick blanket of night and darkness, showing you the way home. Holding onto hope during my bad days is what keeps me going.
9. It is OK to say “No.” I find it extremely difficult to say “no” because I’m a “people-pleaser” due to my BPD. With BPD, I constantly fear abandonment and I worry that if I say “No, I can’t make it” or “No, I can’t do that,” that I will displease people and they will abandon me for saying “No.”
But I’m learning to overcome this fear with therapy. I’m learning that people-pleasing is damaging to my physical and emotional well-being.
In the past, I said “Yes” to everything — putting my health and happiness last — such as attending parties, going out for drinks after work and attending all social events in the calendar, even when I was badly flaring.
Looking back, I see that I was on a self-destructive path, trying to pretend that I was “normal” and self-medicating with alcohol. By putting my health and happiness last, I threatened my physical and mental health. It is not something I wish to repeat. Thankfully, I am no longer on that path.
10. It is OK to talk about your battles with physical/mental illness. It is not abnormal. It is honest. If healthy people can talk about their lives online, so can we. We are not invisible.
I often get criticized for “saying too much” about my life. Why should I be ashamed? It’s not my fault I’m sick. I didn’t choose this life. But this is my life and I accept the reality of it. I am free to share the reality of my life, just like healthy people do with their lives.
Besides, talking about your physical/mental illnesses raises much-needed awareness.
It has been a long and challenging year, but I have learned a lot about myself and my illnesses. As the cliché goes, “life is a journey,” and every single day and experience has been a lesson to me. I’ve had some really dark moments this year and have had times where I thought that I could not go on. Sometimes, I feel too tired to keep going. But somehow, I kept making it through to the next day.
I think the most important lesson I have learned this year is that life is uncertain, whether you have a chronic illness or not. You cannot predict what is around the corner. All you can do, especially when you have a chronic illness, is to live through each moment, taking life one moment at a time.
I wish you all a happy New Year! I hope 2019 will be a good year for us all.
Getty photo by Cn0ra