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Guest Post from Maly O’Grady of The Rheuma Mill, an inspiring single mother of 3 and rheumatoid arthritis warrior and patient advocate. Read her story and tips on parenting with a chronic illness below.
Parenting is hard is it not? It is exhausting, challenging, stressful and frustrating. I could use the same words to describe chronic illness. If that’s the case, parenting with a chronic illness is double the exhaustion, double the challenge, double the stress and makes life twice as frustrating. UUURRRGGGHHHH!!!!
But let’s take it back a bit, what is a chronic illness? Chronic illness means that it is an illness you’re going to have for a while. You’re in it for the long haul. How long? Who knows? But we’re talking months or years if not decades. It’s a persistent condition where the symptoms just don’t go away.
There are many types of chronic illnesses and I’m going to relate to you just one of them: Rheumatoid Arthritis. This is the one I’m going with because this is the one I have.
Rheumatoid Arthritis (RA) is not only a chronic illness, it’s also an auto-immune disease. It’s a disease that causes your system to attack the lining of your joints (synovium) and when it does this, it causes inflammation to the synovium and that causes your joints to swell and limits movement.
It’s not the same arthritis that old people get because people as young as 4 can get rheumatoid arthritis and what I can tell you about RA is that it is absolutely debilitating. Let me put it into context for you: Before I was diagnosed, I was a healthy, fit and strong 38 year old woman. I engaged in MMA and Pole dancing 5 days a week and was competing in Jiu Jitsu competitions. I was a badass mama! Now that I have RA, I can’t even do a single squat or pushup. I can’t kneel or get up off the floor without looking like a turtle flipped on its back.
In fact, in the early stages of my RA, my own children had to lift me out of bed, help dress me and tie my shoelaces. Heck, my fingers were so messed up and swollen, I couldn’t even flick on the light switch! That’s how debilitating rheumatoid arthritis is.
On top of having rheumatoid arthritis, I have 3 children aged 11, 12 and 14. They are hard work and I can honestly say that having pre-teens and teenagers absolutely sucks but that’s a story for another time. As challenging as having children that age can be, it’s a fun age because you can do lots of cool things together!
Oh wait, actually, I can’t because I am parenting with a chronic illness. When you are parenting with a chronic illness, you are limited as to what you can do and how long you can do it for. I mentioned before that I used to do jiu jitsu, well, my kids started doing jiu jitsu not long after my symptoms presented and it just killed me that I couldn’t participate with them and teach them what I knew. It really hurt and that’s just one of the things I can’t join in with.
I can’t take them to the trampoline park and jump with them, I can’t chase them, I can’t shoot hoops with them and I just can’t be out for too long because it is tiring. Fatigue is one of the common symptoms of rheumatoid arthritis and it is just as debilitating as the swollen joints and for some RA sufferers, it’s the worst part. Imagine your body as a faulty battery that runs out of juice really fast and needing constant recharging because that is what it feels like. You can read more about my story here.
Parenting is a demanding job so what do you do if you haven’t got the energy to meet the demand? Does that make you a bad parent? Absolutely not, but it certainly makes you feel like a pretty crappy one. The guilt factor is enormous when you are parenting with a chronic illness because you focus on all the things that you can no longer do for your family.
The family dynamic also changes when you are parenting with a chronic illness because often, particularly in my case, there is a role reversal. The parent becomes the one needing care and assistance. It is really confronting and often leads to depression and self-isolation.
If you are parenting with chronic illness, here are some tips for you:
- Be kind to yourself. You are doing the best you can with what you have. You are enough.
- Join a support group. If you have rheumatoid arthritis, you can join The Rheuma Mill’s community here.
- Communicate. This is a big one. Don’t feel ashamed to express how you feel and what you’re feeling if you need to. Write it down or say it aloud. Letting it out will lighten your burden. This is important for your children as well. Explain to them your situation or they will feel it has something to do with them.
- Put yourself first. Don’t be a hero. If you need to rest, then rest. Listen to your body.
Parenting is not easy and parenting with a chronic illness is even tougher but the greatest thing that we can do for our children during this time is to be a good role model. We need to model for them what they need to do in adversity and that is to be positive and try their best because that is good enough.
Hello! I’m Maly. I’m 39, a single mother of 3, a full time special needs teacher and motorbike rider. I love to travel and can proudly say that I have ticked off every item on my bucket list! Now I can add rheumatoid arthritis warrior to my list.