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12 Things You Can Do to Fight 'Flare Fear'

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If you live with a health condition, you may have experienced a “special” type of anxiety that comes from the challenges associated with your illness. Maybe you worry about how your illness will progress, or perhaps, like Mighty contributor C.M., you fear a flare-up or increase in symptoms of your condition. In an essay that was highly relatable for many in our community, C.M. described what it’s like to feel “trapped” by “flare fear,” which she describes as: “the thought of what might happen if you do too much or choose the wrong activity on a good day, ultimately sending you into a spiral of pain and symptoms and sentencing you to weeks in bed.”

If this sounds familiar, you are not alone. Experiencing anxiety or fear is a natural reaction to living with serious health challenges – but we also know how challenging (and, at times, debilitating) it can be. That’s why we asked our Mighty community to share their tips for coping with “flare fear.” Managing anxiety on top of an existing health condition can be tough, and if you’re struggling, we encourage you to talk with a medical professional. But hopefully some of the following suggestions can be helpful to you in your health journey.

Here’s what our community shared with us:

1. Go slow.

I am afraid to live. That’s the simplest way to say it. Certain things always trigger a flare. Other things will sometimes. Some things never do, but randomly, it gives me one. I get scared and just want to lay in one position all day. But I can’t. So I do things super slow. It sounds so simple and yet ridiculous. But, I will take a shower. Then I sit for 30 minutes to an hour afterwards. Then, I put in a load of laundry and take another break. I make lunch. Another break. I might not have done ‘a lot’ to most people living life this way, but I am so happy if I can do that much and be OK. Sometimes, that’s all I do. But I don’t crash 7/10 [times] if I do it that way.” – Alexandria A.

2. Practice mindfulness.

Mindfulness is my best friend in this regard. When I feel anxious about my health, I choose to move my attention to the current moment. The flare isn’t here yet. The possible worsening of my health isn’t here yet. Being anxious about it is robbing me of the ability to enjoy and take advantage of what I have here and now. It also doesn’t help to compare myself to the past; the past is done, I’m here now, and the only thing I need to do is survive and find joy wherever I can. It’s a skill like any other, one that needs practice and doesn’t always work as well as I’d hope, but it has made a huge impact on my health anxiety levels.” – Ella R.

3. Talk to a trusted friend or loved one.

I call someone and talk with them until the feeling passes and I pray out loud to God to help me. I also make sure I take my anxiety and depression meds on time every day because this flare fear starts up right when the sun goes down!” – Raine M.

4. Document your symptoms, then move on.

After having a very rough past seven months or so with three flares leading to hospitalizations, and each one a bit worse than the one before, I definitely now experience ‘flare fear.’ When I find myself analyzing my skin over and over or checking to see if I can still manage a certain muscle motion, I try to take some deep breaths, then take a picture or write in my planner to document symptoms and then try to let it go and get on with my day and life as best as I can. (There is usually a text or message to a good friend to vent my fear if it sticks around.) Having a chronically active flare cycle has really left me with what feels like a form of PTSD. I’ve managed that due to some personal life issues in the past, so I’m trying very hard to utilize the coping mechanisms learned before into this strange new world of dermatomyositis.” – Linda R.

5. Say “no” (or “maybe”).

I have gotten to the point where my life no longer is different from either being in a flare or fearing the flare coming. I would have in the past pushed and had a blank week after a big ordeal to recoup. It got to the point where I was never able to catch up. Now I say no a lot more. If I say I will do something I always give a warning that I may have to back out, or I may not be 100 percent there. It sucks but eventually you have to boil it down to what gives you the best quality of life. You only get one shot so enjoy every bit you do have.” – Liz V.

I have flare fear daily, but it intensifies when my husband or friends or family are off from work or are in town and expect me to participate in activities, going out places and socializing. Nowadays, I just can’t. I used to force myself to please others and meet expectations. But I can’t anymore or I’ll end up in the ER and spend days in bed recovering. I’m a constant ‘maybe’ person, maybe I can go to the movies, maybe I can go to dinner, maybe I can grab a drink. Flare fear = maybe.” – Sarah C.

6. Decide what your priorities are.

I remind myself that flares don’t last forever. Some things and special moments you can’t get back once you’ve missed them… such as graduations, weddings, recitals, milestones for your kids. These moments I press through because it’s worth it [for me]. A party, a barbecue, the movies… those things don’t matter as much. Having a priority deciding factor in place helps face the fear and gets me through!” – Jenny W.S.

7. Distract yourself with something fun, creative or soothing.

My anxiety is usually caused directly by my body as a response to a symptom, as opposed to a mental health condition, but I find distraction is great key. There are so many apps available at the touch of your fingers, one being Thisissand. You create sand pictures and it’s very calming watching it fall. I also watch TV or get much needed cuddles from my wonderful fiancé. All these are techniques I usually use for pain too.” – Leigh B.

I am afraid of the sun. Or too much sun. Or walking too much. But wait, what is ‘too much’ today? Will I be put on prednisone again? Can people see my pain? When my brain starts to ‘scribble’ (spiral, panic, etc.) I find a different task to do. I get my mind distracted and calmed down and then I try to tackle the fear again. Some days are harder than others. (Hey, that thing is cool.) (My ferrets are soft.) (I’m going to play with makeup a bit/play videogames/write in my bullet journal/[insert hobby].)” – Kristin K.

I like to get lost in Hulu or Netflix or one of my Roku Go apps, I will marathon shows. I am a student at university so during semesters there is homework to be done. I have also just started a paint-by-numbers canvas! I will also spend time with my fiancé and our two little dogs. My mind also wanders to plans for the remodel of our fixer upper.” – Priscilla G.

8. Build a strong support system.

I’ve been officially diagnosed with multiple diseases in the past year so any symptom new or old can send me panicking. My illnesses (endometriosis, interstitial cystitis, migraines, celiac and PTSD) all flare each other, so if one starts up, the others will freak out, and any new symptom makes me wonder if this is just something that’s passing through or if it’s something I’ll need to add to my list to watch for. Luckily I have some amazing friends who let me vent during these times and will talk me down when I’m spiraling, I have a wonderful therapist who I can call or email if I’m getting particularly anxious, and I have a phenomenal PCP who coordinates well with all my specialists and will see me fairly quickly if I need to figure out what exactly is going on. It’s important to have a great team, and when I am flaring, and falling into some terrible flare anxiety, I like to try to take a step back and make some time for some nice self-care like a bubble bath, good craft time or just a nice day on the couch with some Netflix.” – Amelia H.

9. Plan ahead and be prepared.

I try to plan ahead and be flexible. I think about how much rest I need to save up and how much renewal I’ll need. I make sure I have what I need – meds, cane, water, mints, granola bars, warmer/cooler clothes, etc. And then I can’t be afraid to say no, to cancel, to reschedule.” – Sarah A.

I suffer from illness anxiety all the time. There’s no way for me to prevent the flares. But the best weapon I have against them is to always know where the bathrooms are. Signed, an interstitial cystitis and inflammatory bowel disease warrior.” – April S.K.

I had a really great occupational therapist that helped me out. He told me to map out when I was going somewhere (especially if I was going into the city and had to take public transportation) and find places along my ‘route’ where I knew definitely that I could take a break if I thought I was getting to the point of a flare and to find so many along the routes. That way I had a plan and when I started to feel pain I wasn’t scrambling and panicking and making it worse. It had been the best tip I’ve ever learned for my fibromyalgia (well, that and 15-minute blocks of time for everything) and made going places way less scary.” – Devin J.

Have a back up plan and ‘crash bag’ full of essentials in case of a crash. If you are traveling, get travelers insurance if out of state or internationally.” – Rachel F.

10. Inform someone you trust of your condition.

Making sure the people around me are aware of how I’m feeling – not declaring it to everyone but having at least one friend or family member with me who knows what’s going on. If I know I’m headed for a flare-up or unsure what I’m able to do or I’m anxious about plans due to health I always make it clear to someone I’m with. I make sure they know what signs to look out for if I start to go downhill or need a break and make my limits clear. Having someone else able to assess the situation and have my back takes [that] pressure off so much!” – Nae W.

11. Listen to your body.

I’ve learned my body. I have intense chronic pain associated with a spinal defect and multiple surgeries. I’ve been coping long enough now that I know the warning signs that a bad flare is coming. If possible, I take off work, lie down and medicate. Listening to your body and not pushing it beyond your limits helps to reduce the anxiety. It puts some semblance of control in your hands.” – Megan M.

Flares for me mean out-of-control inflammation, joint pain, extreme fatigue and more. I have Ehlers-Danlos syndrome type III with vascular component. I also have mast cell disease and dysautonomia. When I start to flare, I get warning signs. The most important thing is for me to heed the warnings and head it off. Medications, herbals, closely-monitored diet and cutting my daily routine to nothing is key.” – Cassandra P.

12. Live in the moment.

I bring my thoughts back to the present. I remind myself how blessed I am right now to be living the life that I am. I need to enjoy each moment, even if it’s painful, and make memories with my kids and husband when I can. When my flares come, I need to rest.” – Charlene M.

For more tips about coping with anxiety, check out Mighty contributor Amanda Moat’s article about 6 simple ways to manage anxiety when it strikes, and the 22 unexpected things that relax those in our community who live with anxiety.

Originally published: May 25, 2018
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