Jen Donovan lives in Eugene, Oregon, and is a mental health therapist. She posts frequently about her experience with chronic illness (mast cell activation syndrome), and her journey towards wellness. She blogs at Skunk Speaks.
She generously shared her experience and insight as part of the July theme week on the Sostar Self Care Facebook page – System Failure: Self-Care for Sick Days (and weeks, and months).
Tiffany – Can you share (as much as feels comfortable) about your experience with becoming ill and coming to terms with what was happening?
Jen – This was really hard for me because the disease I have is pretty rare and the symptoms are often fairly vague and hard to make sense of. So, for the first six months or so of having acute symptoms, I really thought that I was “going crazy.” Additionally, a symptom of the disease is panic attacks, which further confounded what was physiologically happening to me. I was lucky that I had a doctor at the time who happened to be familiar with the disease and was able to diagnose me. Just having the validation, that I was not just having somatic delusions, was a really important initial step in coming to terms with what was happening.
After that, though, came the second part of “coming to terms” – actually accepting that I have a rare, incurable disease. Again, I was lucky that I had exposure to alternative and holistic healers in my community who helped me realize that although the disease cannot be “cured,” it can be “healed” through major lifestyle and diet changes, among other things. The distinction between “healing” and “curing” has become an important one for me in my process of acceptance.
I acutely remember one day in early February, looking over the four pages of things that an herbalist recommended I start doing to treat my illness, including an extremely stringent diet and major lifestyle changes, and I was just crying and crying and crying. Even being very disciplined with these changes, it can take years to see a significant effect. I had a horrifying moment of realizing my life would never be the same. I felt like I couldn’t do it – it was too much – I would just be sick forever and eventually die. And at that moment of total terror, I had this incredible experience of complete surrender. I felt my “ego” just fade away and I just totally submitted to a journey towards wellness, no matter what it entailed. That was a really important moment in my acceptance.
Tiffany – I wanted to ask a bit more about the idea of surrender – you talk about that as being such an important process, but our culture is so resistant to the idea of surrender. Sickness/illness is something we are supposed to “fight” but in your words, it’s not about fighting illness so much as surrendering to a journey. Can you add to that? It’s just such a narrative shift that I wanted to expand on it.
Jen – Yeah, the idea of surrender has been big for me. I think one idea that has become a major core belief for me is that, generally speaking, the body is infinitely wise. If it’s doing something harmful to itself, it’s because something in the environment is not working for it. It’s not being given the space it needs to take care of itself. Symptoms are messages – our body telling us ‘hey this isn’t working!’ So to “fight” against illness is to disrespect the messages our body is giving us about how to heal. Again, this way of thinking about it isn’t going to work for every person in every situation. But for me what has worked is to accept that the healing is in the wound. That’s a phrase I read from my horoscope by Chani Nicholas at the beginning of the year and I cannot get it out of my head. So instead of rejecting my symptoms I’ve been trying to turn towards them, and accept that my body is doing something important, something meaningful. If I can surrender to the body, work with my symptoms as a partner to investigate why it is struggling and suffering, I’ve made so much more progress than when I was stuffing myself with medications to try to stop the symptoms. This is what surrender has been like for me.
Tiffany – How do you handle the social aspects of chronic illness? Especially the impact of illness on relationships.
Jen – This one is weird and I’m still struggling with it. The first major one was re-navigating my relationship with my primary partner. I realized early on that many of the things we would do together as a couple to bond were no longer accessible for me. I can’t eat at restaurants, I can’t drink alcohol, I can’t do recreational drugs, I can’t go backpacking or even camping for more than a night really, I can’t do super heavy impact play or other s/m activities. I had a couple of weeks where I worried that our relationship would collapse because all these things we had structured our relationship and intimacy around weren’t options anymore. It was scary for awhile. But I eventually recognized that if he decided to leave me because I couldn’t do these activities anymore, then he wasn’t actually dating me for “me,” but for the things I did. And that ended up not being the case. We have had to have a lot of intentional conversations about it, but we have been able to restructure our relationship around activities we can still do. And in some ways our relationship has grown deeper and more intimate because we’ve been forced to do this, and get to know each other in new ways. We have done a lot more things like more spiritual bdsm, tantra exercises, walks and gentle hikes, and we still go out dancing sometimes – I’m just sober now – and we have a great time.
I have found that this illness has given me a strange opportunity to really learn who my true friends are. It was surprising to see who stopped talking to me, or inviting me to events, once I became sick. I think some of it has to do with similar to the above, not being able to do the same things I used to. I also think some people are just really uncomfortable around someone who is chronically struggling. The reality is that even on good days I’m not really “good” – my body is extremely sick! And there are days when I feel very sad and discouraged. I try not to be excessively negative – but I’m also not going to pretend that everything is fine. And I’m learning who can handle that and who can’t, and having to adjust my social connections accordingly. Part of me feels bitter or rejected at times, but part of me sees this as an opportunity to focus my energy on people who can be there for me in a deeper way.
Tiffany – What has been the most helpful strategy you’ve found for keeping yourself moving forward? And, how do you handle those times when you can’t? (I’m asking this one because you always convey so much honest exhaustion and discouragement but you rarely come across as hopeless or despondent – it’s really encouraging and inspiring, and I’m wondering what keeps you tethered to resilience.)
Jen – Honestly, I don’t feel like I have any other option. I think this goes back to that “surrender” moment I had back in February. To give up is to just accept illness, accept death. I have to be real with myself that I will be dealing with this disease for the rest of my life, but that’s where the difference between “healing” and “curing” comes in. I’m not trying to cure myself. I’m just trying to heal. I’m trying to give my body space to take care of itself. And I deeply, deeply believe that bodies know how to take care of themselves if they are given the proper space and environment to do so. So to give up, to not continue to move forward would be to reject this deeply held belief I have and I have just seen too much powerful evidence in the world to do that.
Another thing is that I’ve managed to find some spiritual purpose to the experience, which I think has been essential to me. Here I am, 27, struggling with a rare disease and terribly ill. And yet – I’m sober, I have more fulfilling relationships now than I ever had, I’m eating and taking care of my body better than I ever have before, I’m better at setting boundaries around my health and self-care than I ever have before – my entire life is now centered around wellness and healing. I’ve made these changes because I’ve felt like I’ve had to – and yet… if I hadn’t gotten sick the reality is I probably never would have made these changes. I’ve had visions during meditations recently where it was explained to me that this illness had to happen in order for me to progress in this way in my life journey. I don’t think everyone needs to or can find greater purpose in their illnesses. But it has been a very profound realization for me – that somehow in sickness I have found wellness.
And lastly, there are days when I don’t feel resilient, I don’t feel like I’m moving forward, and that sense of despair and terror sets in. I cry and I wail and I feel like I’m dying and nothing can help me. But that’s part of the process too, in a way. Those fears and feelings are real and to suppress them would be toxic. So, when they come, I really feel them. Just really wallow in them. And usually if I let myself really sob and wallow for awhile, the wave naturally passes and my thoughts naturally start turning to more optimistic thoughts. So I guess that’s a part of what helps me keep moving forward too.
Tiffany – I also wanted to ask more about spirituality, if you want to talk about that. That’s such a difficult and fraught topic for so many people – I know that a lot of folks in my community have come out of harmful fundamentalism, or have rejected religion for one reason or another, but I also know that there are a lot of folks (sometimes the same ones! sometimes others) who are searching for some kind of spiritual connection or process. What has that journey been like for you?
Jen – Well, I’ve come from the opposite situation, lol – my dad is a fundamentalist atheist so it’s been a journey for me to find spirituality rather than get away from it!
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