I have had a long few years of medical symptoms since 2013. I've had odd rashes. And lots of blood tests. My hands burn and turn red. More blood work. Joint pains and fatigue. More blood work and referrals to numerous specialists – dermatologists, orthopedic doctor, and a rheumatologist. I've been diagnosed with rosacea on my face (across my cheeks), dry eye syndrome, "light sensitivity", I've been told I have Lupus, then told I didn't have Lupus. I was told I have Rheumatoid Arthritis, but its “mild. And I have been diagnosed with bursitis, osteoarthritis diabetes, and again, Lupus. I'm 58. In the past 3 years, I have developed “complex migraines” that have triggered stroke-like symptoms. These symptoms are frightening. And the migraines are awful. I also have depression and anxiety.
I have decided I need to love myself through all of my health issues.
We all need to love ourselves. Aging is something we will all do, if we are privileged. I want to do so gracefully, especially with chronic illness.
Self-Love Is: Not Spiraling in Guilt
Having a chronic illness means I will go through guilt, disappointment, and anger with myself when I'm not capable of doing something I really needed, wanted, or said I would do. I feel trapped inside a mind that wants to do a lot and a body that wants to do nothing.
Self-Love Is: Owning My Mistakes
Self-love is realizing I am human. I get foggy, forgetful, and sometimes sloppy due to fatigue or pain. Lupus brain fog is REAL!! I make mistakes — minor to very questionable ones. I get lost easily when driving. I can sit here and wallow in self-pity for my mistakes, or I can move on and learn from them.
Self-love is being kind, compassionate, and patient with myself.
Self-Love Is: Setting Boundaries
This might look like not watching too much TV, not eating too much junk food, not staying up too late, or just saying no to anything I know that will lead to me feeling worse down the road, make me feel uncomfortable, or get me in trouble.
Self-love is reminding myself that these things are a temporary coping mechanism and do not lead to feeling better in the long run.
Self-love is also letting go of toxic people and situations. This includes removing someone who is emotionally draining from my life or someone who doesn't believe I am sick. This includes saying no to plans because I know they will leave me too exhausted.
I recently quit my “day job”. It was my consistent income. However, I drove 1.5 hours to and from work. It was a grueling drive through a mountain with lots of curves. I quit at the recommendation of my family, and my neurologist and rheumatologist. The drive was taking a toll on my body and creating more pain than it was worth. My kids and hubby feared I would have another stroke like migraine and not be able to get help. (there is 45 minutes of the drive without a cell phone signal). We all agreed I would quit my job and focus on my photography business. I struggle now with feeling like I am not contributing to my household. I feel like a burden. However, my husband is extremely supportive and reminded me that I supported him while he looked for a job – for over a year.
When I reflect on what I can still do to participate – sell my handcrafted jewelry, sell my clothing that I can or don't wear, on Mercari or Poshmark, and go out and market my photography business.
This is so much healthier than focusing on my losses. Reframing my thoughts to focus on what I CAN do instead of what I CAN'T do is healthier.
Self-Love Is: Giving My Body What It Needs to Thrive
Nourishing myself with healthy foods and exercise is part of my process for practicing self-love.
Processed, high carb, high fructose/sugar foods trigger inflammation and leave me sluggish, fatigued, in pain, and depressed. And they raise my blood sugar and I feel even worse.
I remind myself that while such foods may be satisfying in the moment, it does not make me feel better or help my performance. That does not mean completely eliminating my trigger foods, as enjoying them in moderation is key. I have learned how to listen to the subtle and sometimes not-so-subtle signs that my body says about what it needs.
I dislike exercising. However, my husband reminds my I always feel better after I do it. I remind myself to go slow as well. I have a tendency to go “ALL IN” on anything and create burn out or too much pain quickly. I can't afford to burn out myself or create more pain. Taking it slow and doing what I'm capable of each day – "progress not progress" is my motto.
My life has become lonely sometimes since I've became chronically ill. Some friends have moved on with their lives or I just don’t have much in common with people I used to spend time with before my diagnoses.
I learned to reach out to those who I know are in my corner. Or are part of my support network. Especially when I feel alone. I have found virtual (zoom) support groups and have made new friends. And found new friends who also have chronic illnesses like me. When I feel alone, I’ve also also found that embracing self-care rituals help makes being alone a bit more enjoyable.
Self-Love Is: Art
There’s no one definition or way to practice self-love. The important thing is how I talk to yourself and treat myself each day. Doing so is a necessary part of living with chronic illness. Without self-love, I wouldn’t be able to practice self-care.
Self-love and self-care are an ongoing journey. It’s normal to struggle and I sometimes still do. It’s okay to not be okay, and it’s definitely okay to ask for help. Research shows that those living with depression and anxiety tend to have poorer outcomes with chronic illness, so treating my mental health is as important as treating my physical health.
But just because practicing self-love is hard doesn’t mean it’s not worth it.
Without self-care and self-love, I wouldn’t be me.
Check the facts
When feeling symptoms, especially ones like pain, fatigue, or weakness, it’s easy to “catastrophize” what I’m experiencing and assume that the pain will never end, or that I’ll never feel any better.
This is especially difficult with chronic illness because the truth is, I won’t feel completely better or have the same level of energy or lack of pain that my able-bodied friends do. Still, there’s a balance between assuming the worst and accepting reality.
In Dialectical Behavior Therapy (DBT), there's a practice called “checking the facts”. This basically means seeing whether my view of a current situation lines up with reality. For me, this works best when I’m feeling immense anxiety or sadness around my current condition. I like to ask myself a simple question, “Is that true?”
This technique helps when my brain begins to spiral around self-pity and fear, believing I will always be alone, sitting in a chair while my friends explore.
“Is that true?” I ask myself. Usually, the answer is no.
Today might be a hard day, but not all days are this hard.
One of the most helpful things I’ve learned to do is keep a gratitude journal for when things go right.
Within it, I note the good: my cat’s warm body against mine as I sleep, good days with minimal pain, the way the sunlight beams through my plants in the morning, my husband doing the dishes, being able to order groceries online, etc
It’s as simple as writing down the little things that make me feel good.
It’s harder to notice the good within my own body, but that helps restore balance, too.
I try to notice what my body is doing well — even if all I can come up with is that I’m breathing and continuing to move through the world.
Some days, I wake up in so much pain, I focus on what's in front of me each minute and write down that thing or situation as being something I'm grateful for.
Upon returning home from a camping trip with my husband and some friends, I crawled into bed and began to cry. I was afraid to admit how hard it had been for me. I felt exhausted, defeated, and ashamed of my failing body.
I realized I needed to advocate for myself. Tell my husband when I've had enough. Or when I need a nap. Or ask a friend to fix a plate for me during mealtime.
Advocating is hard work, because there’s always the fear of rejection, and more than that, the fear of not deserving to speak up for what you need.
Speak up. It’s worth it. People will listen. And if they don’t, find the people who will.
One of my favorite ways to encourage myself on bad days is to look at body positive role models. This is especially relevant for me when I feel shame around weight gain or the way my body physically looks.
I am always on the search for people and role models that make me feel proud of whatever shape I am and whatever way my body needs to be right now.
Remember, any shape or form or weight or number still deserves love, attention, and care. There’s no version of you or your body that deems you undeserving of such things. None.
One of my favorite role models is Terri Hofford on Instagram:
https://www.instagram.com/terihofford/
Finally, I allow myself feel. As cliché as this sounds, it’s crucial.
The day I returned from camping and let myself cry, I felt real grief. Deep, full, overwhelming grief that I lived in a world where people could become sick and not get better. That doesn’t go away. No amount of gratitude, intentional self-care, or anything else will make that different.
Part of loving my body on bad days is just accepting the knowledge that there will always be bad days and limitations. Those bad days suck and aren’t fair. Sometimes they come with sadness and grief so big I worry it will swallow me.
I let that be my truth for the moment. I allow myself to be sad or angry or grief-stricken.
Then, when the wave passes, I move on.
Good days exist too, and both me and my body will be there when they arrive.
Be Kind
to Yourself!
Self-compassion
means being kind to myself when I am experiencing pain, fatigue, or
migraines. This is so important when living with a long-term chronic
illness. Living with a chronic illness is hard so why make it even
harder? We all deserve compassion and that includes ME! When I am
having a high pain/fatigue day, the best thing I do for myself is
have compassion for my body. My illnesses are something I have to
manage every hour of every day. Self-compassion makes it so much
easier. I strongly recommend you make it a daily habit! It actually
helps me figure out how to deal with difficult situations. I have
learned how to be kind and forgiving to myself. I choose
self-compassion over self-blame and self-criticism.
If you
have chronic illness please be kind to yourself.
If you have a chronic illness, please reach out to me. Let's support each other!
Leave a comment below and send me and email:
Email: Deelitefulphotography@gmail.com
- https://themighty.com/2018/02/hygiene-products-cant-shower/
- https://themighty.com/2017/08/hacks-tips-showering-chronic-illness/
- https://www.iswaswillbe.com/
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