I was diagnosed with Systemic Lupus Erythematosus (SLE) in my early twenties. Lupus is a long-term autoimmune disease when the immune system attacks its own tissues, which normally helps protect the body from infection and disease. It is an incredibly ambitious illness in the way it insists on interrupting your life. It is probably one of the most problematic housemates you will ever have to share your body with.
What are the symptoms of Lupus?
Living with Lupus means that I occasionally get the flu, rashes on my face, nerve pain, joint pain, or temporary semi-paralysis in my legs. They are called flare-ups. Sometimes, I might also have a kidney or respiratory infection or even anaemia. Feeling tired a lot is also very common, which is a lot to take in considering that I have a full-time job.
May is Lupus awareness month and here’s my guide to living with lupus, in a way that respects its demanding nature but allows you to coexist with it.
How to live with Lupus
1. Be selfish with your rest.
Stress triggers lupus flare-ups, which in turn amplifies other illnesses that often come with lupus. Prioritise your rest, despite what people might say. During a battle of their opinion vs your suffering, the winner is clear.
2. Practice speaking up for yourself in the hospital.
Medical gaslighting is a major problem with chronic illness. Many doctors and medical professionals will wave away or underestimate your symptoms. Do your research about your illness and learn to stand your ground. Sometimes, it may be the difference between keeping your life and coming close to death.
P.S.: You can start your research by checking this lupus Reddit account.
3. Pay attention to how your body feels.
If something feels wrong, it probably is. Sometimes the solution could be getting more sleep. Other times, a hospital visit. Listen to what your body says. It is your most reliable compass when it comes to dealing with Lupus.
4. Your diet is your business.
Everybody and their mother will tell you they have a diet they swear will cure your lupus. They mean well but you are your first best dietitian. If a food makes you feel weird, cut it out, or see if the way you are consuming it is a problem. It is through this practice of trial and error that you will create a diet that works for you.
5. Water is not a suggestion. It is a must.
Lupus and the medications often used to manage the illness can be dehydrating so drink your water faithfully. Getting a water bottle helps you stick to your daily water goals.
6. You cannot exercise like everyone else.
When I first got diagnosed with Lupus, I went crazy with exercise. I was doing high-intensity home workouts every day. I found out the hard way that I was harming myself more than I was helping. I found that less-intensity workouts are a good fit for people living with Lupus.
Also, whatever exercise regimen you choose, prioritise stretching because lupus tends to stiffen the muscles and joints.
7. Be serious with your medication.
Take your meds as prescribed. However, if your drugs make you feel weird, please see your doctor as soon as possible. I know taking your drugs every day can be exhausting and sometimes life happens. Forgive yourself for skipping your meds and get back on it as soon as possible.
Also, when choosing supplements, listen to how they make your body feel. Here’s one list and another list of necessary vitamins and minerals that can be a helpful guide for choosing a supplement that works for you. Currently, I take an iron &amino acid supplement because I am anaemic in the morning, and ginseng at night before bed.
8. Prioritise self-care.
I know life and responsibilities can make self-care a luxury. However, with Lupus, self-care can be as simple as giving yourself a break, having a day where you do nothing, and ignoring everything to just staying in your bed for at least an extra hour. You can also plan for a self-care day. Whatever you do, make sure it is relaxing.
If you can afford it, I would recommend therapy. Journaling helps as well. However, therapy or not, I have found that allowing yourself to feel emotions like being angry at your condition helps. You are allowed to be sad about your lupus. It is a heavy card to be dealt.
9. Be picky about your close relationships.
Chronic illness is 10 times more bearable if your close relationships are with kind and understanding people. You do not need people who insult you for being ill. Lupus is lonely and painful enough, you don’t need the extra pain from external parties. It may take you time to build a support system you trust, but it is possible.
10. Avoid the sun.
The sun is not your friend, even though people living with Lupus need Vitamin D from the sun. I recommend taking a Vitamin D supplement instead, with the support of your doctor. Also, please use sunscreen, and get hats and sunglasses to protect yourself if you have to go out under the sun.
Managing pain and bodily changes
To have lupus is to live with pain every day of your life. The pain fluctuates. Some days, it is intense. Other days, negligible. As John Greene wrote, “Pain demands to be felt”, and lupus pain is obnoxious with its demands. There are no medals for being the best pain handler, complain if it hurts and take that painkiller.
Additionally, your body will change because of lupus and the medications you are taking to manage your condition. Your weight will fluctuate, and honestly, the only way out is to like yourself through the changes. I didn’t say love, because there will be days you will hate your body. But if you like yourself enough, you will get through it.
Lastly, Lupus will burn a hole in your bank account. From planned and unplanned doctor appointments and emergencies that turn into hospital stays to medications and supplements. This illness is high maintenance, so I suggest having a Lupus saving plan or account.
I can’t cover everything in this guide but you found it helpful and helps you feel seen. To end this, I will leave you with an Eloghosa Osunde quote I return to often – “Maybe it’s not possible for us to have everything right here right now, the world being what it is, but it’s not true that we can’t get closer to what we want.”
