My Voice
Explaining your chronic illness to family
Explaining your chronic illness to family can be a good or challenging experience. Some will understand what you’re going through, and some will not.
Explaining your chronic illness to family can be a good or challenging experience. There will be some who will totally understand what you’re going through, and unfortunately some who will not.
Yesterday, I had some family over visiting. After spending some time in the house, we decided to go outside and let my cousin and nephew play. I wasn’t feeling too well but I didn’t want it to stop me from spending some time with family.
After about 20 minutes outside, I started to feel tired. I had called my brother, who was inside, to switch places with me to watch the kids. A family member said to me, “just sit on the step”. I told them I really didn’t want to. The sun was becoming too much on my body and I really needed to come inside. They proceeded to say to me, “oh, so you can’t be outside”. And I kindly let them know that I am sensitive to the sun and if I stay outside any longer, the way I feel now will increase. They were not mean but I definitely felt their intense curiosity.
When explaining my autoimmune disease to family and friends, it is always a touchy situation. I know they mean well, but I don’t know how they will respond. We are all in our 20s and 30s, but I can not do all the lively stuff that they can do.
I am always willing to educate them on my illness and experience. For instance, yesterday I was explaining to them my gastro issues. One my family member’s thought my mixed connective tissue disease was in remission because I now have a new medical issue. I kindly explained to them that my autoimmune disease can be a precursor to developing other illnesses. The illness attacks your organs. So any complications I have, for instance, my gastro problems, could be a direct result of the mixed connective tissue disease.
I let them know that mixed connective tissue disease is a chronic disease, symptoms generally come and go, and it is unpredictable. You can ask me to go out with you early in the day and by the time night comes, I could be tired. For this reason, I know many will not understand. Sometimes, not even family. Thankfully, I have supportive people around me, especially my father who helps me explain to others some of the symptoms I may be feeling.
I never want to be burden or divulge too much information as if I’m complaining. Sometimes, I simply want others to understand I suffer from a chronic illness. Some days will be good, some days will be bad, but the main thing for me is that I’m still living.
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Unheard Voices Magazine is a news reporting platform covered under Copyright Disclaimer Under Section 107 of the Copyright Act 1976, allowance is made for "fair use" for purposes such as criticism, comment, news reporting, teaching, scholarship, and research.
My Voice
Chenelle’s Chronic Life: Getting healthier and losing weight, one smoothie at a time
In a previous post, I talked about how through medications I have gained a lot of weight. Now I’m making a plan to lose the weight, one smoothie at at time.
In a previous post, I talked about how through medications I have gained a lot of weight.
Throughout my entire life, I have always struggled with my weight. My weight problems are genetic. My father’s side of family has always been on the heavier side. On my mother’s immediate side of the family, no one was obese.
My mother struggled with her weight in her later years because of the long-term prednisone use, but she never had weight issues in her younger years.
My father always struggled with weight his entire life. He would tell me stories about his weight going up and down throughout his life.
Before I started my weight loss journey, my father had lost 100 pounds by simply changing his eating habits and exercising. It inspired me to finally get all the weight off that I wanted.
About two years ago, I started my weight loss journey and by the end of 2015, I had lost 60 pounds.
In January 2016, my doctor, wanting to treat my energy levels, put me on an anti-anxiety medication to give me more energy. I never really been a person to look at the side effects, only the serious ones. Unfortunately, even though my doctor knew my weight loss journey, prescribed me this medication without the warning that it can make you gain weight. It was also my fault for not looking.
The medicine started making me feel absolutely better, but within one month’s time, I started to realize I was gaining weight.
At first, I thought it was because I had slipped off the gym a little being consumed with grad school and I had recently got into a relationship. I started to pick up the pace again in the gym. I didn’t gain but I didn’t lose either. After several months went by and increased visits to the doctor’s because of my sinuses, the weight kept creeping on. My doctor seemingly forgot that I had lost 60 pounds and said to me “so what are we going to do about the weight”. I was frustrated because I was doing everything I could. At that point it had been two years since I’ve had red meat or pork. I do not drink soda and when I want a taste of juice, I get a bottle of water with a juice packet (those 5 calorie sugar free packets). I try to stay away from eating bread. When I rarely do eat it, it’s whole grain.
I was exercising two-three times a week and I looked at him with anger when he said “so what are we going to do”. The things I told him, I felt were going in one ear and out the other. I knew in the back of his mind that I was eating chitlins, pasta, and fried foods everyday. I just walked out the doctor’s office and said I’m just going to go harder.
Shortly after in August 2016, I had a routine upper endoscopy and colonoscopy. Days after the procedure, I started to feel an unbearable pain in my stomach. The doctor said that it was relatively normal to feel the pain a few days after the procedure, but the pain started to persist well after a week. By the time September came, I feel into a deep depression.
From the pain in my stomach and a recent doctor’s visit, I realized I gained most of my weight back. I went back to the primary doctor and I literally started crying in the office. I said to him, I am doing everything and my weight keeps going up and up. I had literally gained 7 pounds in one week while exercising and eating right.
Though there are many challenges with lupus, one year after my diagnosis, I had my weight under control. The next year, it was all back on. The doctor seen my frustration, looked at my medications I was taking, and said “oh yes, this medicine can make you gain weight”. He put his head down. He immediately took me off the medication and I lost 15 pounds by the end of 2016.
And well after that, it has been a stand still. With the constant pain in my stomach and being on prednisone more than 4 times this year, it has been rough to get the weight off. I felt like I was at my last end and was just going to give up.
After speaking with several health and fitness professionals, I started to try the smoothie route. I make my own homemade smoothies, no self-made products. I am trying to drink a smoothie for breakfast and then gradually move to breakfast and lunch, and for my dinner a chicken or fish meal with vegetables. The ingredients I put in my smoothie are:
- ginger
- cherries
- raspberries
- strawberries
- almond milk
- and a hint of honey
Over the years, my weight has always been a challenge. Although I was athletic as a child, I still was never the “skinny” girl. Throughout the years, I’ve always seemed to manage when my weight got too much out of hand. I will honestly say as I’m typing this today, I am the biggest I have ever been. It has become depressing and a challenge. But I know I got this, one smoothie at a time. This week I have already lost 5 pounds.
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Unheard Voices Magazine is a news reporting platform covered under Copyright Disclaimer Under Section 107 of the Copyright Act 1976, allowance is made for "fair use" for purposes such as criticism, comment, news reporting, teaching, scholarship, and research.
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