Coping as a Chronically Ill Parent

Let me draw your attention to a good article by a parent on The Huffington Post called “6 Survival Tips for Parenting When You’re Sick.” Please read before continuing.

Now let’s think about putting these into practice if you’re a chronically sick parent.

Point 1 advises you to “do the bare minimum.” Basically put life on hold and catch up when you’re feeling better; that makes sense right? Forget the housework and rest… knowing that by building up your strength, you can complete these tasks with gusto. Sure that’s common sense — to a normally healthy person.

Now I’d like you to see this situation from the view of a chronically sick parent. Imagine taking this advice if you are sick every day. If I didn’t drag my pain-riddled backside out of bed, my family would never eat, never have clean clothes and would live in a pigsty. I could rest for 100 years and never feel “better” or complete tasks with gusto. I have to forget ever feeling better because it’s never going to happen. I have no choice but to get on with it.

Yes, I totally agree that parenting while sick is hard. I just ask you to remember that some of us do this daily, forever. A common cold isn’t a death sentence.

Point 2. “Call in the troops and ask for some help” even though you find it hard for others to handle your jobs in their own manner. Let them feed the children, entertain them, help with chores and even run errands. You feel guilty asking, right? It’s hard to lose your independence and ask someone else to take control of your life.

Now again from a chronically sick perspective, this is hard — not just because we have to ask for support but because we repeatedly have to ask for support. I no longer feel I have true independence or that my life is my own. My life is a series of spontaneous plans based around how I feel every day. I can’t regularly walk my son to school, I can’t always look after my own children, and I hate having to see my partner solo parent while I’m in bed in pain. I don’t do bath time anymore due to the pain of bending over, I cook erratically, and often dinner is fast and thrown together. I spend many, many hours alone. Alone in bed, sleeping my life away while someone else manages it.

My children have been passed from pillar to post since birth, with my many wonderful friends looking after them. The guilt I feel is insurmountable but “they know you love them” is what people reassure me. This doesn’t make the situation any easier. I want to look after my children.

Point 3. Encourage empathy. Being unwell allows you a chance to show your children and loved ones how to express empathy. It lets them show the human ability to care for another. To be patient and understanding, just until you’re on the mend. It’s not much to ask and it won’t be forever…

Unless you’re chronically sick! Unfortunately empathy can only stretch so far. Even those close to you can get tired of being the “strong” ones. They can’t repeatedly tell you “there, there it’ll be OK,” when they know it won’t. There’s only so much positivity you can grasp from loved ones, who also experience the feeling of despair and hopelessness you feel. Your loved ones don’t want to have to feel sorry for you all the time. They want to build you up and give you hope and positivity. My children really feed off my situation and it’s incredibly hard to hide when I’m struggling. I don’t want to affect their behavior or worry them.

There’s also a right and wrong time for each emotion and so you all end up tiptoeing around each other. Too much positivity when all you feel is despair can often tip you over the edge. Sometimes you do just need to embrace the feeling and work through it. It’s all part of the acceptance process you regularly revisit. I’m fortunate to have very caring children.

Point 4. Sharing germs. Now this is an important one right now. You try your hardest to keep your children away from other sick children, right? Then when your children do fall ill, you find yourself saying, “Well I’m not sure where they got it from, it must have been so and so’s fault.” I see many parents saying, “Well I better not get it, I have too much to do.” Indeed as parents, you don’t have time to be sick. You have a job to go to, children to look after, a house to run.

I’ve given up trying to explain to people that I’m immune suppressed and that many basic illnesses are much worse to someone like myself. There’s absolutely no point trying to quarantine children, especially if they are at nursery or school age. They will get bugs along life’s journey and these illnesses can pass. There’s no point worrying about who or where they contracted it from. Why seek blame when bacteria is all around children? As adults you can try harder to not spread germs.

I probably spend most of the winter months with additional bacterial or viral infections due to the nature of the season. I don’t see many adults worrying about spreading germs. In fact in nearly every office I’ve worked in, I’ve had to explain why being a “martyr” when sick is not a smart move. Yes, you’re concerned about money. Yes, you don’t want to have a sick day… but by taking your germs into an air-circulated area, you are choosing to infect a whole heap of people. With children it’s often impossible to avoid but adults… you can be a tad wiser about this. I don’t just get a cold for a week, maybe two. It can hang around a whole month or two. I can’t fight infection due to the medication I take for arthritis. My immune system doesn’t function properly and so must be suppressed to prevent it attacking my body, causing widespread inflammation. This means I can catch germs faster and suffer much worse. I have a flu jab every year because the flu can be fatal to people like me.

So next time you feel too proud to stay off work, or worry about “what the boss will say,” or losing money, just remember some out there may get far sicker from catching your cold. If they work, they could lose a months pay or have to work while incredibly unwell to keep a roof over their head. Your two days out sick could prevent a disaster for a chronically sick person. Be smart, not a hero.

Point 5. Stop trying to be the perfect parent. This is an emotional one for me. We all want to do right by our children. The thought of keeping them stuck indoors for a few days just seems cruel, right? They get bored, start to misbehave and you know this is your fault. However it’s just for a day or two.

Now think about being stuck indoors for a week… or more. I can’t move from the sofa and my daughter is begging me to play, go outside or make her something. I physically and mentally can’t parent for 70 percent of the time at the moment. It’s become increasingly hard for me and my family. We’ve sought help from local services but so far haven’t received anywhere near what we require. My partner chooses to work, so we can stay independent of benefits. Due to this, we are therefore not entitled to more help with our children. It’s not my partner’s fault I’m sick… why should he quit to be my carer and help with the children so we then receive more support? It’s nonsensical. The system is all wrong.

I have missed out on so much time with my children. They spend more time with their child-minder, friends and Nanny than they do me. I find this so hard but have to remind myself they are safe, fed and loved. See my previous blog post “Mummy’s Guilt” to read more on this subject.

Point 6. “Avoid getting sick in the first place.” Unfortunately being immune compromised means taking vitamins and miracle snake oils have zero effect on my immune system. I simply have to deal with it. If I want to be able to walk and not be in bed daily, I have to stay on my immune-suppressive meds. I have to make a choice between one ailment or another. There’s never an easy option for the chronically sick. Most medication comes with its own side effects, and we merely swap one problem for another. If I could have just three weeks of every month well, I’d be elated. Right now my flares are cyclical and I spent 50-75 percent of my time sick and in heaps of pain. I will always extend empathy to anyone who is sick. We all deal with our ailments individually and as only we know how.

All I ask in reference to the original six points are the following six points…

1. Never call or see parents as lazy. If we’ve managed to keep on top of jobs, you better believe we’re amazing!

2. Support us unconditionally. Understand we want to remain independent too.

3. We are empathetic if you’re feeling sick, but sometimes hearing about it feels insulting.

4. Don’t be a martyr. Stay home if you’re sick.

5. Don’t judge our parenting. Support us, and reassure us. Never say, “Well, why did you have kids?”

6. Do offer support. Don’t offer snake oils, mindfulness or miracle cures. We’re the experts.

I’d like to add that it still surprises me when I hear comments insinuating that we choose to be sick. After reading this, do you think we like being this way?

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Purestock