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- June 11, 2021
The other day I sat with my friend Sue, and we talked about suffering.
Sue and I both have a lot of suffering experience.
We each lived through very serious health crises in our young 20s and 30s – crises that changed our entire lives without permission. Together we marvelled at how bizarre it is that our lives up until that point, lives we deemed full of education and support, had left us fully unprepared for what to do when it all goes wrong.
How is that possible? I wondered. That life leaves us without an instruction book on how to do the worst things?
I thought back to late lonely nights researching my health conditions on message boards. There was advice on how to get better, how to seek treatment, how to deal with symptoms – but no advice about how to survive emotionally, now that a bomb has gone off in your entire life. How do you see the world, now? How do you believe in anything?
I have that instruction book now, about how to get through things that feel like they will end us, or feel that they have already ended everything. But many don’t. For people who get diagnosed with an autoimmune condition, they are thrust into this journey suddenly, and without permission.
So as a coach I’m passionate about giving that “how to survive this” manual to my clients, and guiding them into creating their own manual, too, now that they’re facing something they never wanted to face. And I wanted to make sure my first blog post was about this, too — potentially the most important thing I could talk about as a coach.
Here are some strategies and wisdoms from myself and from my clients, so that you’ll have something to use when it’s your turn to go through it. Things I’ve learned along the way.
And guideposts that can point you home…
1. Suffering is not a moral issue.
I met one of my best friends, Kait, in a 12-step program. And when we would be do outreach calls to each other Kait would always tell me when she was suffering, that she knew it was okay because she knew it wasn’t a moral issue. “I ate too much, it’s not a moral issue.” “I’m annoyed at my sponsor. It’s not a moral issue.” “I don’t want to go to work today — it’s not a moral issue.” What was going on in Kait’s life, though distressing, didn’t make her good or bad. It didn’t change HER in any way. It wasn’t a moral issue. I think this is one of the most important lessons of all when tragedy strikes and that’s why I put it first first. When something horrible happens, when the utter worst occurs… it isn’t a moral issue. It isn’t about how good and bad you are. It’s not personal. It’s not your fault, your karma, or your responsibility. You didn’t do it. You don’t deserve it somehow. You didn’t make it happen. You didn’t create it. You didn’t create your disease no matter how many spiritual gurus tell you you did. You’re deserving, you’re good, you’re loved and you’re the same as everyone is. Suffering is not a moral issue. It just happens. Put down the hammer. It’s hard enough already.
2. You didn’t lose control — LIFE is not in control.
I will never forget the first time I spoke one on one with Carolyn Freyer-Jones, my coach’s coach. I was searching for answers about how to move on with my life now that I’m well — how to move on from the years of pain, helplessness, time as a “sick person,” the senselessness of it all. The waste. She listened carefully and respectfully, got quiet for a minute then she told me that it sounded like I thought I had experienced a kind of life that was different from everyone else’s life once I got sick, but in reality, I was living a life that was the MOST the same as the rest of us. She told me about her mentor, Ron Hulnick, the co-founder of the philosophy of Spiritual Psychology and his perspective on tragedy. That when you’re going through it, it’s like you’ve been given a set of glasses, that shows you the fragility that we all live with every day. The reality is, nothing is guaranteed for any of us. Health, beauty, partnership, money, respect, success. All of life can be taken away in an instant. When you’re grieving — when you’re sick or disaster has struck, you just know in a deeper way the truth that is always present– that nothing is guaranteed. You’re not different… you’re actually the MOST the same. Life is not in control. Our culture doesn’t acknowledge this fact as accurate. But it is a fact. And there is beauty in this. When life isn’t in control you know to cherish the good times. When life isn’t in control you aren’t as cruel to yourself or those around you. When life isn’t in control, you take every moment you can to be kind and do right. That’s what your tragedy is preparing you for. It’s beautiful…. And…
3. You don’t have to think it’s beautiful or helping in any way right now.
It’s okay if it doesn’t feel like anything good will come out of this right now. Right now you’re suffering. Sometimes there is no silver lining in sight. It’s okay to just think this just fucking sucks and is completely fucking insane. It probably is fucking terrible. The only stories that I could relate to when I was at my sickest were stories from Death Camp survivors. Seriously. That’s how much it sucked – my illness was like going to a prison camp, and looking out the bars at people who were free. Anyone telling me that this was okay or good or “for the best” in any way during those times felt like they threatened to annihilate my reality — it made me SO much worse to feel that I was also thinking and FEELING about my illness wrong. NOPE. Trash that thinking if you aren’t ready for it. There’s a point where it’s helpful… and a point where it’s not. Honor where you are. You aren’t doing this wrong.
4. Hurt with the part of you that thinks this sucks.
A lot of people won’t understand what you’re going through. This isn’t their fault, they just aren’t living your reality, and… you need compassion and understanding to survive this. So, tell yourself you’re sorry for you, and really mean it. Put your hand on your heart and tell yourself “I’m so, so sorry you’re hurting right now. I’m so, so sorry you have to go through this. It’s terrible. It’s unfair. It’s unimaginable. It never should have happened. I am so, so sorry this happened to your life.” The self-compassion you offer will feel better than anything anything else can do for you. Be on your own side. Understand that the grief of an illness is the grief of your past life, your current life, and your future life. It is a tremendous burden of grief. It’s serious and it’s very real. Take yourself seriously right now. What you are going through it immense and you deserve an enormous amount of compassion and gentleness for you. Imagine you are bleeding, and you need soft touches, and kindness. Imagine a small animal, or a young child that is has been wounded cruelly and unnecessarily. That’s you. Treat yourself accordingly. Nothing helps as much as this.
5. Part of Life is not getting what we want, aka “this is not a moral issue” Part 2.
Don’t get it twisted. Part of LIFE is not getting what we want. All of us don’t get the job. Get the family. Get the marriage. Get the health. Get the body. Get the money. Get the Mom that lives. Get the Dad that stays. Get the spine that isn’t injured. Get the lungs that breathe well. Part of Life and what it has to teach us, lives in not getting the thing, sometimes the the thing that really mattered to you. You haven’t done anything wrong. This is a part of life, and your grief is equal to the love you felt for the thing that was lost. Grief is the flip side of love. If you love powerfully, you will grieve powerfully for the thing that is lost. This is not a detour from your life. This is part of it — it’s a part of your love for life.
6. You’re not supposed to be doing this faster.
Sometimes these journeys through darkness are exceedingly long. Longer than the movies make it look like it will be. Longer than we think can possibly be good for us. Longer than is cute or sexy. I was undiagnosed for 20 years. Twenty. Then it took two full years after diagnosis at age 30 for me to start to get my quality of life back. Quality of life that I thought I should have had 20 years before. There were months and months, even once we knew what was going on, where I looked bad, felt bad, couldn’t style my hair, couldn’t be happy for people, wept, screamed, barely worked, never laughed, sat around and watched TV waiting for the next blood test. That time felt like such a waste to me, then. I know now, that it wasn’t. I was just wrong about the time it takes to do something really important.
The fact is… important things take time. Things like healing. Things like changing. It reminds me of the parable of the caterpillar and the butterfly — something Sue and I also spoke about during our time together “When the caterpillar goes into the cocoon,” Sue told me “it’s gotta think it’s closing up shop. It’s gotta think it’s all over for him, that this is surely going to kill him. Then… it doesn’t. And actually, after it all goes dark for a while, he breaks back out, and he has FUCKING. WINGS.”
See there’s a process to Life. Things take the time they take. Transformations especially. And tragedy is often the beginning of a transformation. Once again — if that thinking is painful right now, fuck it. But if you’re able to see the light, that this is transforming your life and you may just in the cocoon right now only THINKING it’s over but you could be wrong… that can help.
7. Try to identify with sensations, over stories.
“I’m feeling a lot of sensation in my head right now!” is better than “this is my fourth migraine this week I’m probably dying !” Here’s the lesson with this one: when things are incredibly hard, your brain will tell you all sorts of stories ABOUT the hard thing, that will make you much more suicidal than the hard thing itself would on it’s own. “This will never end.” “This shouldn’t be happening.” “No one else has to go through this.” “I’m disgusting and hideous.” “Is it possible this is cancer?” These can go on and on and on and on and on and on and on. And in truth, the most excruciating part of an event is more often the story you are making up about the event, than it is the event itself. The truth is, you don’t know what this migraine means. It may not mean anything. Your illness (or grief or whatever it is) could be over tomorrow. So name the sensation instead. Act like a scientist. Approach with curiosity. “It feels like something is squeezing the upper portion of my right eyeball. What an intense sensation!” Is better than “I can’t believe I have another fucking migraine my whole life is over because no one has ever had this many migraines how will I ever be able to work if these migraines never stop I’m probably poisoned what poisoned me, what poisoned me… ” etc etc etc When my sister was taking birthing classes in her third trimester of pregnancy, her doula taught her to identify contractions as “intense” rather than “excruciating.” The same thing applies here. Intense is an observation. Excruciating is a story.
8. Distraction is okay.
During suffering, there will be times that what you’ve been asked to live through is so overwhelming that being in it one more second feels like it will crush you. This is just a fact. In those times, distract. Sleep. Watch puppies online. Don’t think. It’s okay to put this down, it’s okay to go away for a bit. Turn on the TV. Distract. My phone saved my ass for about two years of my life when I couldn’t urinate without excruciating pain. It helped to be distracted on the toilet. I did what I had to do. You should, too. Distraction is okay.
9. It’s temporary.
Really, truly, this is not forever. Actually. I know you’re thinking “you haven’t felt pain like mine, mine never goes away my life is worse than anyone else’s life has ever been,” but even if you think that, the truth is this is not forever, anyway. You can’t fuck it up with your thoughts. This flare will go away, this grief will pass. This panic attack will end. This cramp will be over. It passes. This moment passes. Goodness comes back. Even in the darkness. You can’t stop it. Relief is coming for you. Even if you don’t believe me. Sue has a piece of paper on her living room table where she writes “It Passed” every time a flare stops. She looked me square in the face when she showed it to me. “It always passes.”
10. Expressing the feelings makes goodness come back faster.
The best way to make it temporary is to get those feelings OUT. NOW. Scream. Wail. Smash things. Rage. Keen. Write to God about what a sadistic fuck he is. Do whatever you have to do to get the feelings out. They’re coming up for a reason. They need to be spoken. Rituals are good, too. Burn things. Throw things into the sea. Hold seances. You won’t be here in the grief forever, so do it right. And afterwards, it will most likely pass. You’ll get that burst of hope to keep fighting. You’ll get that sense of peace and connection to something greater again. You don’t need to be a good girl or boy about this. Get it out, as ugly as it is.
11. Tell people. It’s okay for people to be uncomfortable.
Tell people. You don’t have to do this alone. It doesn’t matter if they don’t get it. It doesn’t matter if it stresses them out. Tell them anyway. We are all connected. Your experience is essential to them because they are a part of you and you are a part of them. It’s important for you to speak about this, so it’s important for them to hear. Tell people.
12. There is light here, too.
Don’t buy into the idea that this is only bad. It may be the worst thing that’s ever happened to you, and… it’s probably not true that every moment has been torture. I met my boyfriend at my sickest. I healed years of pain with my family when I was at my sickest. I worked one of the best jobs of my career when I was at my sickest. I didn’t have a single day that wasn’t hard. But I had parts of lots of days, that were easy or fun. Even an hour. Even a morning. Those count. There’s light here, too. My coach Amber lost her coach Michelle Bauman, to cancer in 2015 and Michelle is famous for saying that the year she spent fighting cancer was not the worst year of her life. I think that’s inspiring and when I think about it and compare it to my experience… it’s true. Not every moment was pain.
13. Finally, for those who are sick, seek a root cause approach.
If your tragedy is like mine and you’re sick and no one knows why… find a root cause practitioner. Email me. There is hope for you. Google “functional medicine practitioner.” Read books by Dr. Amy Myers, Dr. Tom O’Bryan, Dr. Izabella Wentz. Don’t give up on your life just because your doctors did did. My diseases taught me that none of us are entitled to anything, and that gave me the opportunity to fight for my life, which was a gift and a privilege. Don’t give up. People are getting well all the time. In short….
I believe in you.
…and your pain. And there’s nothing you can do to stop me. Bless you where you are. Bless your suffering. You aren’t the only one. And tell me what you do to get through yours, below.
Check out my Three-Month Radiant Health Groups.
- Have unresolved health complaints that you can’t seem to crack
- Have an autoimmune disease that your current treatments aren’t controlling
- Have health and wellness goals you’d like to meet, but never feel you have the strength or discipline to create them
This group could be for you.
The group will:
- Give structure to your healing
- Provide accountability, inspiration, and emotional support to keep going when you’re stuck
- Provide information about treatments and therapies you won’t hear from your doctor
- Introduce you to the six root causes of chronic illness, so you have a roadmap to follow for the rest of your recovery
- Surround you with like-minded people, who are all cheerleaders for your growth and wayshowers for a life you didn’t know was possible for yourself.
- Create more ease, acceptance, joy, and hope in your life.
- Get you on the path to a full remission of symptoms.
If this sounds like you, complete my contact form and we’ll set up a time to talk. No matter what, our conversation will serve you. There is hope to end chronic illness, permanently.