Life with primary immunodeficiency: How to stop yourself from spiraling when you feel symptoms coming on

Everyone knows that dreaded feeling – waking up in the morning with a scratchy throat, a stuffy nose, or a pounding headache. Thoughts swirl around your head: work may be hectic, making it challenging to take time off; upcoming travel plans could be disrupted, or a big birthday dinner might be on the horizon. Your mind starts to race. “What is my illness going to mess up this time!?”

Having primary immunodeficiency hinders the immune system, which means those with PI get sick more often and sometimes in a more intense manner.

Whatever it may be, getting really sick is never something people want to deal with. Which is why having a primary immunodeficiency is so difficult. Those living with PI don’t have normal functioning immune systems, which makes it easier for them to catch illnesses. And when they do, the illness is oftentimes more intense and harder to get rid of.

The other day I woke up and my throat hurt. I started spiraling and took myself down a rabbit hole. I had just started a new job and Christmas was coming up. I did not want to feel terrible while I was trying to enjoy the holidays.

I have been sick on so many vacations with my friends and family, and I tend to make myself feel bad when changing the plans in order to grab some medicine or sit out on things to rest.

After feeling the sore throat, I focused on resting and hydration for the next couple days, and luckily the symptom did not amount to some lengthy illness. I didn’t get any other symptoms, and it went away in a couple of days. Normally this is not the case, but I felt very lucky and was glad that I didn’t allow it to stress me out too much.

How do I stop myself from spiraling?

I understand that it’s a very hard thing to do, and I still struggle with it. I tend to convince myself that there is something larger wrong with my body and it makes me really scared.

However, succumbing to mental chaos is extremely unhelpful. When we start to spiral, we must restore peace in our minds. It’s crucial to make yourself comfortable and confront your symptoms as best as you can.

First of all, it is important for you to recognize if you have felt these symptoms before. I’ve gotten sinus infections so many times, so when my nose gets stuffy and I feel pressure in my face, I just know that it is probably that. I’ve gotten comfortable with a couple of medicines that I loved, and have them handy for when a sinus infection comes on. (If you get recurring sinus infections, check out my article with my go-to medicine)!

If the symptom you are experiencing is particularly alarming, going to a doctor is definitely the move. Where I live, there is a clinic where I can make fast, easy urgent care appointments right from my phone. They have tele-health and I like to start with that and explain my symptoms to see what the best course of action is. If they deem necessary, I will go in person and get tests done.

Once you assess your symptom(s) and take necessary action, it’s important to realize that not everything is in your control. As I always like to say, it is important to control the controllable variables. You can’t know every little thing that is happening in your body, but you can control how you take care of yourself.

Make sure to drink water, rest, and take necessary steps to give yourself time to recuperate. Life’s responsibilities can’t always be put on pause, but you have to make it work to the best of your ability.

Try not to let your thoughts run wild

This has happened to me more times than I can count. What I need to remember every time is not to borrow trouble. You have no way of knowing what tomorrow will bring. You have no idea how long you will be sick and how intense this bout of illness will be. All you can focus on is today and how to navigate what your body is experiencing.

Having a chronic illness is not only physically taxing but it can cause a great decline in mental health. Some people may experience a sense of loss because they are mourning the lifestyle they once had. Up until about 5 years ago, I was extremely healthy. I was hardly ever sick, and I didn’t have to worry about missing things in life.

Unfortunately, things are different now. From time to time, it really sucks. And it’s okay to acknowledge that it sucks and that I wish I could make it all go away.

However, I don’t feel like my life is any less full. I have chosen for this disease to be a part of my life, not my whole life.

If you’re feeling discouraged, just know that sometimes you have to take it day by day. If you aren’t feeling well, give yourself a break! Make some tea, throw on Netflix, and lay in a comfy blanket. Accept that you may have to miss that dinner you have planned. The beautiful thing is that there will be more dinners! There are so many more amazing days that you will get to live. If you choose to focus on the wonderful exciting parts of your life, it will help you endure the dark, depressing days.

Take care of yourself. If you feel a mental spiral begin, take a deep breath, bring yourself back down to earth, and asses the actionable steps you will take to remedying your symptoms!