Self-care is an essential topic particularly in the context of parenting or even caring for special needs people. You could have a spouse with a chronic health condition, or you could be an adult child caring for an aging, ailing parent. Or, like me, you could have one or more children with special needs. I’ve named this blog “Empowered Grace” after my daughter Grace who has childhood-onset schizophrenia, but, in reality, I have four daughters three of whom have special needs. My youngest has an autism spectrum disorder, and my second daughter was diagnosed with cyclothymia last Friday–a bipolar spectrum disorder. Clearly, my husband’s and my genetics have combined in a most interesting way. We won the genetic lottery.
It seems counterintuitive to put yourself first if you are the primary caregiver, and, at times, it’s damn near impossible. I have learned through experience, however, that it is crucial to take care of yourself–to nurture yourself–or you will be useless to the people in your life depending upon you to nurture and care for them.
A few months ago I noticed that my hair was falling out. I also noticed that I was getting gray hair. I had to go to the dermatologist as well because my skin had transformed into that of my 17 year-old self. Gray hair, hair loss, and acne? What curse had befallen me? My nails had become brittle, and I was chronically exhausted. I also had a terrible taste in my mouth that no amount of teeth brushing and gargling would eradicate. My libido had vanished, and within 6 months I had lost fifteen pounds. The problem with the weight loss is that I didn’t need to lose fifteen pounds. I don’t need to be 6 feet tall and size 4, but I was well on my way. As it turns out, I was anemic, my vitamin D levels were in the toilet, my thyroid was sluggish, and I had a zinc deficiency. This was all due to my not taking care of myself. To getting lost in Grace’s multiple and relentless crises. I was no longer able to manage the stress in my life so I made some kind of tacit agreement with what circumstances seemed to only confirm: “I don’t matter. Just keep calm and carry on even if that comes at my expense.” I stopped sleeping and eating with any kind of consistency. I stopped exercising because I couldn’t leave Grace alone or with anyone other than myself or my husband. I just…eroded into a state of existential transparency.
I see a lot of people take this road because they feel forced onto it, almost cut off from the world of the living by horrible circumstances and a lack of resources. It doesn’t take a lot in our present economy to tip a family over the edge into financial uncertainty or even crisis. I know the statistics. There are many families dealing with pediatric mental illness who are under or even uninsured. They struggle to make rent and even feed their families. I’ve been told more than once that I’m one of the lucky ones because we are insured, and I’m able to make the necessary sacrifices in my schedule to be home should a child need me. Alas, the finger wagging, and “shoulding on” and “Oh, aren’t you lucky that you can stay home and take care of your children,” doesn’t make it better because those aren’t really supportive statements at all. They are minimizing statements that cause suffering people to internalize their pain lest they sound “whiny” or “ungrateful” because they start to think that it could always be worse. “I guess I shouldn’t share how I feel about my schizophrenic daughter and my autistic daughter and my bipolar daughter ( or fill in the blank with your circumstances) and my struggles to be a good mom. I mean, I’m not homeless WITH these children in tow. My husband isn’t beating us. We have insurance although the deductible is high. I guess I should just be quiet about it. I can stay home, but I have to stay there. I’m landlocked. Oh, but that’s fine. It’s all good. Some people don’t have insurance at all. I suppose I really should just swallow it and cope.”
So, Step 1 in taking care of yourself is: Find a supportive community where your circumstances won’t be minimized or normalized. While I want to know the truth of other people’s circumstances so that I can offer support and keep a clear perspective on my own situation, I don’t want my life to be compared to someone else’s nor should we compare our pain, struggles, and issues with those of others. It will never be a valid comparison because no two people are alike. For example, The National Alliance on Mental Illness offers support groups for parents and siblings of those suffering with mental illness. There are ‘Moms’ Night Out’ opportunities and other similar offerings. To find your local NAMI, go here. A note: Beware of what I call The Professional Victims. I’ve run into quite a few women who compete with one another in the area of “I feel worse than you do” when it comes to taking care of their special needs children. It seems that many of these caregivers will deliberately neglect themselves for the sake of playing the martyr. I know I’m making a bold statement here, but it’s very important to listen to their language and then watch how they interact with their children and with others. They are very loud and draw a lot of attention to themselves about their fatigue and lack of sleep, sighing loudly all the time. They carry on about how little time they have for themselves casting contemptuous glances at their children. They emanate bitterness and anger, and they are one of the primary groups who will minimize your pain because they are always suffering more than you. If you’ve managed to shower and comb your hair as well as match your socks? Beware. Clearly, your child must not really have a legitimate problem because YOU look relatively presentable. I was actually told once that I was not being taken seriously in our IEP process because I didn’t look exhausted and sick enough. This comment reflects the aforementioned toxic attitude so prevalent among this group of people.
Step 2 in taking care of yourself is: Pay attention to how you feel about yourself. When I was in the thick of Grace’s psychosis last summer, I felt absolutely adrift and, well, ugly. I’m a Southern gal at heart when it comes to my appearance, and I love being a girl. I love hair, make-up, and mani/pedis, but I had lost all motivation to care for myself not to mention the time and money. Most of our extra money had been usurped by medical bills. I felt discouraged, uncomfortable in my skin, and ashamed. I wanted nothing to do with my husband in the bedroom. I was honest with myself about what it would take to feel better. I just wanted a cut and color. I could give myself a mani/pedi. I found a local cosmetology school that offered cuts and color at a substantially reduced price, and I got my cut and color for $40. I felt like a new woman, and that boost to my self-esteem energized me enough to get me through the rest of the summer. So, do what enhances your self-esteem be that finding time to exercise, giving yourself a mani/pedi, or finding affordable ways to make yourself feel better by getting back to your hobbies or the like. Some of those cosmetology schools also offer massage. When we nurture ourselves in this way we tend to nurture those around us, too, not to mention we are modeling self-care. A suggestion for reduced price self-care opportunities: The Aveda Institute.
Step 3 in taking care of yourself is individual counseling. I did and continue to see a therapist. I have found it extremely helpful in checking my reality and getting support as a mother, wife, friend, and woman. It’s the one place I can go and just be myself. My therapist is a wonderful woman who is immensely supportive, and she is like a cheerleader for me. People like this can be few and far between in our lives, and I recommend that everyone find time to develop a relationship with a therapist. Many fantastic therapists have sliding fee scales so be persistent when searching.
Step 4 in taking care of yourself is addressing one’s diet. In my case, eating. Period. I stopped eating for days at a time during Grace’s crisis. I was nauseated much of the time, and I had no desire to eat. This was a huge contributor to my nutritional deficiencies and unnecessary weight loss. I have Fibromyalgia, Celiac Disease, and Chronic Migraine Disease. Not eating is only going to exacerbate the migraines and cause “fibro flares”, but, at that time, it just felt that everyone else’s needs surpassed mine. I felt lost in the maelstrom. I still have a problem eating due to the side effects of medication, but I have since learned to fill in the gap with supplements. Supplements can eat away at a budget but figuring out what gaps need filling in has changed things drastically. I follow a gluten-free diet religiously due to the Celiac Disease, but the GF diet can cause certain deficiencies. I do not drink soda–ever. Because I struggle to maintain caloric intake I can’t include empty calories in my diet. I do drink tea and coffee, but both have noted health benefits. I make my own GF breads so I can choose which flours to use and what to add to enhance their nutrition. After visiting my doctor, I have a list of supplements recommended for inflammation (Turmeric, Vitamin D, and Fish Oil) and stress (Rhodiola and Schizandra). I take a few others (zinc, L-Arginine, B-12 due to longterm anticonvulsant use, Vitamin C, multi-vitamin, Elderberry, Milk Thistle for liver support, and Calcium-Magnesium). After adding the turmeric whose active component is curcumin, I have cut my NSAID usage by 80%. That’s substantial. My migraines have improved as have the Fibromyalgia symptoms.
Step 5 in taking care of yourself is remembering who you are as a person outside of your family and whatever troubling or trying circumstances envelop you. After years of dealing with crisis after crisis, I began to feel like I only existed to meet the needs of my family and my ill or needy children. If it wasn’t autism, then it was something else. Now, it’s schizophrenia and a bipolar spectrum disorder. What will it be tomorrow? I needed an attitude adjustment, and I needed to find myself again. I needed to remember who I was. I started going to the local museums that I so loved, having tea in the afternoon in my pretty tea cups, listening to music I like, dancing in my room, and doing little things here and there that awakened me to, well, myself. Don’t miss this. Gracie was still around. She was still skulking around the house in either a manic or depressed state. She was still hallucinating. Milly was still banging on my bedroom door claiming to need something, (“The cheese is broken!“) I just chose to finish dancing to my favorite song or calmly drink my Monkey Picked Oolong in the midst of the latest psychiatric crisis. This is my life. It’s not going anywhere so I needed to learn to find the beauty and the joy in it. I needed to remember that I was so much more than just Grace’s mother or a homeschooler or a… I am me, and I was me long before I was Grace’s mother or my husband’s wife. To me, that’s the best thing you can do to take care of yourself.
Hold onto yourself because YOU are what everyone around you loves, needs, and leans on. And, YOU are still your best advocate.