9 People Talk About Their New 'Normal' With Chronic Illness

I had health challenges as a child, but had a much easier teenage years before illness started building up in my early 20s. Even so, there were things that I have experienced all through my life that I can now explain because I understand my autoimmune situation.

I developed Raynaud’s while still in high school. I lived in the hot and humid Mombasa in Kenya but my school had air conditioned class rooms. or at the very least, ceiling fans. I never knew why my hands and fingers went numb and turned white when I went indoors.

I’ve also never been able to handle extreme temperatures either way. Walking in the hot Mombasa temperatures was rough because I would almost always overheat and not sweat enough to cool down (Sjögren’s). The first thing I would do when I got home, or where I was going was look for water to wash my hands and cool my face. I was super sensitive to the sun, so I’d avoid walking while the sun was high, carry a small umbrella, look for shea butter and coconut oil because some old lady told me it would help with my sensitive skin.

I wanted to know how lupus and/or chronic illness had affected other people, so I went ahead and asked on my page. Some of the responses I got reflect my own experiences, others remind me just how much more careful, empathetic and kind I have to be with everyone because you never know what they have lived through to stand where they do.

1. “Showering takes so much energy from me. I have to prepare mentally. Then when I go in I have to make sure everything is in reach. I shower sitting on a shower stool made for the infirm. You realize there’s a lot to cleaning up. The scrubbing, rinsing, drying, oiling and moisturizing, sunscreen and other necessities, then you have to get dressed. Afterwards, I’m so exhausted its like a ran a marathon so I need a bit of time to get my breath back. This used to be so easy!” – Someone living with lupus and heart disease

2. “The stress that comes from trying to be at your best for your friends’ and family’s sake can be so draining. ‘OK’ becomes a default answer to so many questions, but ‘OK’ also means so many things at the same time. I miss my old self, the self that didn’t get tired 15 minutes after waking up, didn’t get nauseous over everything and had no pills to take. No one prepared me for the uphill task that emotional turmoil would be with lupus.” – Waithira

3. “I never open my bedroom curtains so that I can be in darkness.” – Anonymous

4. “As a person living with spinal muscular atrophy (SMA), sitting is a challenge due to sclerosis. Feeding is hard too, since my mouth can’t open fully.” – Anonymous

5. “Mine has to be waking up and staying functional. I sleep in aide of medication that knock me out. It takes me till midday to fully get up. So usually I’ll take an energy drink to jumpstart me, but by 3 p.m. I’m so exhausted, so I’ll have to leave work early to go rest. Now I’ve been labelled ‘lazy’ by people around me. I wish they understood.” – Anonymous

6. “I’ve had rheumatoid arthritis for 39 years. Since I was a teenager. So I’ve got used to it. Challenges include carrying shopping, chopping food to cook, dropping and breaking things (I need both hands to hold a cup of tea) and the treatments, grateful as I am for their help,which hammer your immunity and make you vulnerable to every bug. And tiredness. I hate going out for dinner because I just want to be in bed at 8. When I was younger I felt my deformed hands and feet were ugly, but I can now embrace them as a part of me.” – Juliet Barnes

7. “I have been living with systemic lupus erythematosus (SLE) for the last nine years…Nine years of ups and downs. My life has completely changed. I have lost friends and loved ones. I can no longer walk short distances without resting. I can’t bend for more than five minutes – my kidneys are inflamed and the right one is only functioning at 10 percent. I can’t do most of the house chores I used to do. Friends who keep on saying ‘you always complain of pain everyday.’ Not forgetting the drugs that I keep on taking 24/7, moods swings (mood error), moon face, and stretch marks that make me look like a ‘zebra.’ SLE has really changed my life.” – Anonymous

8. “Matatu (kenyan public transport van) has always been my preferred mode of transport. It has never been an issue for me. But I am that girl who was always late so hopping in and out of matatus in Tarzan-like motions was near automatic. Until one day I could not get into one. Lupus, consequent muscle atrophy, the medications and a drastic reduction of activity has greatly reduced my motor ability. Now, getting into matatus has become something of a science, the correct step, a precise angle and a certain degree of inclination. Buses, in particular, have been nightmarish. Nothing is more embarrassing than needing someone to pull you into a matatu as another pushes you from behind. You quickly lose the desire for travel, and home becomes some sort of prison.” – Kanja Mwingirwa

9. “One of the things that really used to get to me was the low energy. I was coming from a point where I was super active and energetic. I would work Monday to Saturday in my high heels, and my free time was used for my side hustles.

“I was/am self driven and did not understand why I couldn’t wake up early and once awake I would be fatigued till late in the day, couldn’t climb a flight of stairs without being breathless, and did not want to engage in anything extra. I was always in pain and discomfort. So painful that if someone touched me with a little pressure I would be in excruciating pain, and always suffering from one symptom or another.

“My hair fell off and the butterfly/malar rash has since transformed my face. Lupus also affected by mind. Brain fog would sometimes attack even in the middle of a meeting. I would get very easily upset and sometimes confused.

“Following my diagnosis and kicking of treatment, eating the right diet (autoimmune protocol) the support of my family, a few friends and the Lupus support groups and community I have since improved and while some days are worse than others most of the symptoms have diminished or disappeared.

“My hair has grown back. Mouth sores have since reduced and only come and go, wounds come and go but are much less frequent, my skin is still healing and will get there.

“I have more good days than bad, and have learnt to be more grateful for every small gift life has to offer, have less expectations, listen and obey my body and put myself first.” – Evelyn

I imagine that some changes affect some people more than others. But everyone’s experience is valid. It is OK to feel overwhelmed in the short-term, but once you have acknowledged those feelings you can begin accepting the challenges and building new normals. At least, I hope I can.

Getty Image by Milkos