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Why the World Doesn't Feel Safe When You Live With Primary Immunodeficiency

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You know (or can guess) how it feels for a woman, walking down the street at night, keys between her fingers and jumping at shadows. She knows she’s vulnerable, but she wants to live her life. She wants to meet her friends and do fun things – she doesn’t want to just give up and hide at home where it feels safe.

She doesn’t want fear to control her life decisions. She reads the news, she talks to other people. She knows what can happen to women, but she goes outside anyway.

That’s what it feels like to have a primary immune deficiency. Even if you’re so lucky as to be well enough to be living a fairly “normal” life – working full-time, socializing, going out – you still live in fear. Viruses and bacteria live everywhere. They’re all over you and all your friends, the things you touch, the things you eat and the air you breathe. They won’t all hurt you…But some can and will. You’re vulnerable, but you want to live your life.

Just like the woman can do all she can to stay safe, sometimes her keys aren’t enough. Sometimes walking in the middle of the street isn’t enough. Sometimes the threat isn’t on the scary streets, sometimes it’s people she knows and trusts who hurt her.

We try make accommodations for women. We put up brighter street lights, we encourage bystander intervention. We make laws that penalize people who hurt them. We put patrols out and teach young people not to hurt them.

You don’t need to hold her hand, she probably doesn’t want you to guard her. But you can support her and be there for her. You can offer to walk her to her car if she wants. You can ask her to call you when she gets home. You can rally for her right to feel safe on the street.

People don’t look at you and see that you might need extra support, but you do. You need accommodations in the workplace, you need your friends to understand your situation, you need your family to care. It all helps. You can try do it by yourself, but it won’t be quite enough. In order to try live a normal life, you need a little extra thought from others.

I have common variable immunodeficiency (my immune system doesn’t work properly) and I have bronchiectasis as a result of this as repeated infections have permanently and irreversibly damaged my lungs.

I’d be dead if it weren’t for modern medicine – I’m not Darwin’s fave. And the world isn’t made for me at all.

In order to live a more “normal” life, I have to get intravenous antibody replacement therapy every month, which is ongoing for the rest of my life. This renders me fairly useless for a day or two and I struggle to go outside in that time.

I also have to manually clear my lungs two times a day (they don’t clear themselves) so they don’t fester and get infected. This is not a pleasant experience at all, but it lessens my cough and lung infections so it’s just my new normal now.

These are the things I do so I can pretend to be normal. I get literally nothing else from doing them. I don’t get extra powers – my immune system is still weak, and I still cough chronically. This is my attempt to try get myself to as close to a level playing field as everyone else.

It takes my comfort and time. Every day. Every month. I hardly have a choice. It doesn’t feel fair. And it’s like a bandaid over a very deep cut.

The immune treatment is very effective in preventing me from not getting horribly sick all the time, but it’s not quite enough to make me normal. I’m still more likely to get sick than the average person – I’m quite vulnerable.

Even more fun is that if I do get sick, it’ll be for longer than the average person, and I need double the dose of antibiotics to get better. And that’s just for bacterial infections – things like viruses don’t have antibiotics to kill them, so I need to rely on my aforementioned unreliable immune system to kick them.

My compromised immunity can also cause simple afflictions to spiral into something more deadly, as I found out earlier this year when a simple lung infection (that I didn’t even know I had) turned into sepsis overnight. I was hospitalized for a few days, quarantined in the infectious diseases ward and treated like I was in an episode of “House.”

Reading this, you must understand why I feel vulnerable and afraid. No one likes getting sick. And sure, no one wants to get more sick, more often, and worse than other people. Hospitalization is always bad and scary. And on top of that, no one wants those sorts of horrible experiences to double down on them and damage their organs, making them even more vulnerable than they were before.

I carry my hypothetical keys between my fingers – I do my treatments, I’m careful about germs, I exercise and try be healthy. It’s important to me to be able to live my life despite everything, because if I can’t do what I enjoy, what is the point?

But I need the extra lights, and I need the extra support. It might not be enough to keep me fully safe, but it’s more than I can do by myself. Sometimes even just the offer to support me is enough to know you understand it’s not safe out there for me and that you care. (But I might still want to try do it myself anyway.)

What I am asking for, as an person with a primary immunodeficiency, is your understanding that the world isn’t safe for me. What is manageable for you could put me in hospital.

I need you to see that the common cold that you have is dangerous to me and to know that you should keep it away from me. Stay home and get better.

I need your honesty and integrity. You know that even if you can hide it physically, I am still vulnerable and at your mercy if you are contagious.

I need your hand hygiene, your food hygiene, just general hygiene. Cough into tissues and all that stuff they tell us when we’re growing up.

I need your bystander intervention. If you know someone is sick and they don’t know my situation, I need you to speak up to them or myself.

It’s not personal, it’s a matter of safety.

I need you to stand up for my rights. My right to be at work in a safe environment, free of contagious bugs. My right to say I can’t do something due to this condition without ridicule. This is a disability and reasonable adjustments and treatment free of discrimination is my human right. (Remember to treat disabled people how you would want to be treated – it could just as easily be you falling ill in a society set up for able-bodied people).

I need your immunity. I need your vaccinations and your flu jabs. The less vulnerable you are to infectious diseases, the less vulnerable I am. Vaccinations don’t work for me (they require a smart immune system to remember them) and I’m relying on whatever I got from the donated plasma in my body to keep me safe – which I don’t even know what that could be or how effective it is. I am genuinely, seriously afraid of the measles outbreak because I’m afraid it could kill me.

And last but not least, I need emotional support. It is a lonely world to be one in 50,000. It is a scary world to know you’re weak on the inside, especially if no one can tell from the outside.

Sometimes support looks like understanding that occasionally I can’t fulfil my obligations to social events, or maybe even work deadlines. You can know for damn sure that I will do what I can. I don’t give in easily, but sometimes my body says no. I need you to know that’s not me saying it, it’s my body and unfortunately I’m stuck in it. Please listen to me when I say no.

Sometimes support is a quick message, a funny Instagram tag or an amusing political satire video if all above has still failed and I’m ill and bedridden. Being horizontal for days isn’t a choice and it’s so boring and lonely. I am an extremely extroverted, social person – I need human contact. I even feel lonely after my monthly treatments. I’m not sure I’ll ever get used to them.

There are so many ways you can make accommodations for the immunocompromised. The hypothetical brighter street lights, the bystander intervention, the watchful eye, the justice and the education. Please look out for us, we need your help and we don’t ask for much.

We notice your support, and we appreciate it from the bottom of our hearts that you make small changes that hugely benefit our safety and comfort so we can live our lives to the fullest (and hopefully avoid hospitals while we’re at it).

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

Gettyimage by: stephconnell

Originally published: January 19, 2018
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