Survival Mode

By Leanne Donaldson

3 min read

I used to think about "Survival Mode" as a reserved point in our lives in which we are maybe lost in the forest or desert, doing all we can to find food and shelter. Perhaps it can even apply to those first 3 weeks with a new baby. That’s all about Survival Mode for sure. You know what I mean?

Managing what life throws at us

Life is full of different modes, or points in time in which define how we manage what life throws at us.

There’s "Coasting Mode," which is one of my favorites. When everything just seems to flow. There aren’t too many hills or valleys, we are just coasting along. I believe that most “healthy” people spend the majority of their life in this mode.

Then there is "Excel Mode," this one is a rare beast. Generally reserved for those times of remission, or the fleeting moments when all the medications are working in sync. Excel Mode is something of legend, kind of like Bigfoot. People talk about it. Some people claim to have seen it. But there is little evidence that it actually exists.

But more often than not these days, I live in Survival Mode.

Living in survival mode

Survival Mode makes it difficult to plan ahead. The farthest ahead I can think in Survival Mode is maybe 24 hours out. It is barely all I can do to get a glimpse of the end of the tunnel. In Survival Mode, everything is done moment to moment. There is no planning. There are no preparations. Survival Mode is all about getting by.

How does this apply to life with psoriatic arthritis?

Depending on where you are in your treatment cycle, (either still finding a medicine that works or living treatment to treatment) your Survival Mode might look a little different.

Waiting to find something that works

In my experience, living in Survival Mode while you are waiting to find a medication that “works” is the absolute worst. There is no light at the end of the tunnel, nor do you have any idea when you might get any relief. There you sit, pumping chemical after chemical into your body, hoping each day that you will notice even the slightest difference. Survival Mode while you are waiting to find a medication feels absolutely never-ending.

Survival Mode, while you are waiting to find a medication, means that only the bare minimum of living gets done. You can’t cook. You can’t clean. Chances are if you work outside the home, very little is getting done there either. I remember praying nightly that life in Survival Mode would just end. The world passed me by. I wasn’t even an active and willing participant in living my own life.

Survival Mode while waiting for your next PsA treatment

Survival Mode, while you are waiting for your next treatment, is a whole different thing. When you have found something that at least “sort of” works it’s like you have a glimpse of what life should look like. But every treatment has its own peaks and valleys.

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There is a natural flow (if you will) from treatment to treatment. No matter if it is a week or 3 months between treatments. It takes a bit of time to work, then it works well for another bit of time, finally quitting altogether before your next round of treatment is up, at least in my experience.

Survival Mode between treatments

Survival Mode falls in those time periods just after and just before your treatment. With this form of Survival Mode sometimes can come a bit of panic. What if my next treatment doesn’t work? Will I have to stay like this forever? What if something happens and I can’t get my next treatment on time?

The only thing keeping me putting one foot in front of the other is knowing that relief is on the horizon. Feeling better and catching up with my life is just out of my grasp and that keeps me going until I can push on and get out of Survival Mode.

I just keep telling myself, one foot in front of the other, just keep going...

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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rojo Member
Reading this article was a bit unsettling for me as it so accurately describes my states of being (as do many of the articles you write). As I start on my sixth post-diagnosis year, and am a ways into the fourth biologic, I spent the last two months living in what you so accurately described as Survival Mode. It started as a minor stiff neck. Within twelve hours felt like the worst case of whiplash. After fourty-eight hours (Saturday) and sleep deprived I'm thinking I have to get to the ER tomorrow. Well, tomorrow it started to feel better. And the next better still. That's when my shoulders started to ache. Three days later and sleep deprived the only thoughts I have are 1) This is an incredibly bad inflammation episode, 2) This biologic has stopped working and this present level of pain and inability to do almost anything but breathe could be my new reality. Time becomes meaningless then evaporates. After two months wash, spin, recycle, I contacted my rheumatologist who immediately increased the dosage of the biologic. It's four days later and I am back to minor aches, only occasional pain, and my version of well rested. I am grateful for this reprieve. Oddly I am very grateful for the new Sword of Damocles which reminds me to value my healthy moments and make the most of them. Thank you for your articles which most often express very close similarity to what I have experienced, physically and emotionally, with this disease and the accompanying medicines and other treatment modalities. This disease can so easily make one feel isolated. Your writing dispels that. I don't do social media but am thankful I found this site.
1. Leanne Donaldson Moderator & Contributor
 Sounds like you really had a rough couple months <inline-mention user-id="3308696" username="rojo"/> ! Seems like everyday is a new surprise with PsA isn't it?! I'm humbled by your kind words and am grateful that I was able to help you feel a little less alone. Somehow it makes what we go through a little more worth while if we know we aren't all by ourselves. It is wonderful that you were able to increase your dosage a feel a bit better, rather than having to start all over at ground zero with a whole new medication. Either way, we just pick ourselves up and try and carry on as best we can, right? Isn't it funny how our versions of "well rested" have changed over the years? What I never would have accepted years ago is probably considered a great day today. We are so grateful that you are here and a positive part of our community! -Leanne, Author
Diane T Moderator & Contributor
<inline-mention username="Leanne Donaldson" user-id="3312035"/> Thanks for sharing this information with the community. I have been on 8 biologics. With that being said, my psoriatic disease is at its best. Having this illness sometimes makes us feel as if we are alone, but we're not. But as you say, we are all in survival mode. I agree - relief is on the horizon. Thank you, Diane (Team Member)
dboinhb Member
I’ve been making the transition between “living the disease” and “living with the disease”. It used to define me and happiness went by the wayside. My pessimism made me pretty difficult to be around. After praying and finding support I quit letting it control my life. I definitely can’t plan more than 24 hours out but know that with extra rest before and after the fun stuff I can minimize flairs. I’ve got several pain relief options so on “normal” effort days I avoid strong ones but when I want to dance or go out with my husband I may switch to the stronger stuff and/or extra caffeine. Note that I am on disability so no longer work and my daughter is grown so my responsibilities are minimal. On bad days In survival mode I’m blessed to be able to rely on my supportive husband who knows he’s lucky when I just get a simple dinner on the table. 
1. Leanne Donaldson Moderator & Contributor
 <inline-mention username="dnoinhb" user-id="3283105"/> Your comment made me smile. I could truly feel the change in perspective and outlook that you have made. You stated so clearly the differences between the two. I love that through prayer and the right support you were able to change things around. I too find prayer very helpful in managing the PsA. It really seems like you have come to a very healthy “relationship” with your disease that is just the perfect balance of you managing your PsA instead of it managing you. Kudos! I hope your hard work continues to pay off and you also get a few “good” days coming your way. Sending you gentle hugs 😀 -Leanne, Author and Team Member 
2. Diane T Moderator & Contributor
 Hello <inline-mention username="dboinhb" user-id="3283105"/> , I just wanted to see how you are doing. We haven't heard from you in a while. How are you doing with your PsA? Diane (Team Member)
frances00 Member
I've been in survival mode for 3 months. It's so wearing.
1. CathyD Moderator
 <inline-mention username="frances00" user-id="3316880"/>, it really is. Sorry to read that you've been going through this for three months now. Is this due to a flare? Sending you the softest hug! -Catherine, Community Moderator 
2. Diane T Moderator & Contributor
 Hello <inline-mention username="frances00" user-id="3316880"/> , I just wanted to follow up and see how you are doing. Did things get better for you? We understand what you mean by wearing. Would love to hear from you. Diane (Team Member)

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