My Soapbox

The Sick and Shut-In

I was 27 when I was diagnosed with lupus. My world was turned upside down. It was a relief to put a name to the changes that were taking place in my body (joint pain, tiredness/fatigue, headaches, muscle aches). At the same time, it made me even more introspective than I typically am. I questioned God daily. Lupus is hereditary and often misdiagnosed. However, there was no history of this disease in my family. Naturally, I often wondered, why me?

In my early 30s, I started having constant leg pain. This was when I received my 2nd diagnosis of fibromyalgia. The symptoms are very similar to lupus. After finally coming to some sort of resolve about being sick, I felt that I had to start all over again. When I began sharing that I had fibro in my legs, I was often met with eyebrow raises, and the explicit remark of you can’t have fibro in just your legs. I am not sure how so many people knew that, but after weeks of research, I concluded to believe my doctor. 

At age 40, I learned that lupus began to attack my liver. After weeks of being sick, blood tests, urine samples, teladoc visits with a gastroenterologist, and constantly reassuring some that it wasn’t COVID, it was concluded that I had a relatively mild case of autoimmune hepatitis. Mild as it may be, I had never been that sick, and it was scary. But again, relieved to know that there was a name for whatever was going on in my body.

Now at 41, my blood pressure has elevated beyond the normal limits. I am not saying that I have high blood pressure because I don’t want to. I went to my 6-month check-up with my rheumatologist and after the nurse read my blood pressure measurement, she asked had I been stressed, eating salty foods, or experiencing headaches. I’ve had headaches off and on since my sickest I’ve ever been stint but did not give them much thought. I was instructed to monitor my pressure for a week and then follow up with my primary care physician. I have yet to make that phone call. I will. I am not prepared to receive a prescription to fix this ailment.

After all this, I think I have the authority to suggest what someone like me needs as support. But not just me. Anyone you know battling cancer, depression, death of a loved one, or seasonal allergies. It’s the thought that counts. The pandemic has taught me that everyone goes through something. I felt as though I lived in a bubble because it was hard to verbalize what I was feeling and experiencing. The pandemic popped that bubble. I still have days where I am still in my head, but I am much more aware and mindful of others’ sufferings.

Below are just suggestions on how to offer support. These aren’t things I necessarily need now but what I wish I could have received at some point along this journey. However, my parents have been highly supportive and intuitive. Not everyone has that level of support, so making that extra effort for those around you is vital now more than ever.

  • Random wellness checks
    • I remember being home for several days because of a flare. I had a friend ask why I didn’t say I was sick or not feeling well. I think it’s odd to call or randomly text that I am nauseous or achy. So, to avoid that awkward exchange, sending a text, phone call, or email asking how I’m feeling, physically or mentally, is encouraging, even if I choose not to answer honestly.
  • Offer to run or assist with errands
    • There have been many days when I needed to go grocery shopping or get my oil changed but did not have the energy or strength to do. Asking if you need anything is too vague. But, on a good day, asking your friend if there are tasks or chores they cannot do when they are sick, and shut-in allows you to be more specific to their needs
  • Making sure they eat
    • Technology and COVID (in my opinion) have made it easier than ever to have food delivered. So many restaurants had to pivot, so there are my options for getting and giving food without leaving the house. If you know what meal your aunt loves, send it! Or better yet, send some money via cash app, PayPal, Venmo, Zelle, etc., so when the time comes, the need is met.
  • Offer a ride to the doctor or pharmacy
    • Even though medications can be delivered (I’ve tried to do this once, and either I couldn’t figure it out or it wasn’t beneficial) and ride-sharing is convenient, making the offer shows sympathy.
  • Ask if they have all of their meds
    • This may seem intrusive and a hard thing to ask. I went years without all of the medication I needed. I was underinsured and was too prideful to ask for help. Prayer (and my parents, if I let them know I needed help) helped me float until I could land a salaried position with benefits. Even then, the monthly bill of medication was hard to initially maintain. Don’t feel obligated to do this but do what you can.
  • Try to help with hair maintenance
    • There were countless times I needed to wash my hair but did not have the energy to do so. If I could have gotten to my stylist each time I needed to, I would have been so grateful. I have a lot of hair, so asking someone to come to my house to assist would have been more than a notion. But just getting my scalp massaged and cleaned so was therapeutic. I still don’t know the best answer to this need other than offering to fund a hair appointment.
  • Visiting
    • I am a loner. I don’t need someone to keep me company when I don’t feel well. Because I am awkward, I would probably feel obligated to stay awake when I want a nap or be hospitable. I may need this more than I realize; regardless, having someone physically present makes the difference.
  • Prayer
    • It changes things.
  • Give space to vent/cry/whine
    • I have created a special bond with one of my friends because I can call or text her with my list of ailments or complaints. After all, we are sisters in the same ship. God knows what you need when you need it. I don’t always know how to respond to her, but she understands how she feels. I don’t go to her expecting a solution, but I send a text with the assurance that she knows what I’m saying even if I don’t say it all.
    • If you know someone is walking the path you have taken, be there and ready to receive.
  • Encourage exercise
    • Send that 5 am wakeup call to get them moving. Offer a gym membership. Gift a pair of walking shoes, exercise leggings, gym shorts. These things can serve as reminders that they need to move to better health

I am sure I could add more items, but these are just a few things that I have observed as a need or needed myself. I am terrible at asking for help; aside from becoming invisible, I wish I had the power to ask telepathically. Pan means all. We all know someone who needs help, and we all need help. Sometimes just offering makes a difference. Be the change you want to see.

Give love. Get love.

2 thoughts on “The Sick and Shut-In

  1. hey Valerie, great read, I remember trying to do some of those items listed with Angela, sometimes people in need should also realize that they are not a burden to the people who care

    Like

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