For those of you that have been reading this blog, or other’s that I have written back “in the day” you are aware that I have many chronic illness- including Systemic Lupus, Rheumatoid Arthritis, Fibromyalgia and various other Auto immune Diseases. You also know that I work as a Clinical Psychotherapist, predominately with women w/PTSD, Depression and/or Anxiety. I also work with women who are fighting chronic /acute Diseases and physical pain.
I recently read an article in The Cut about women struggling with Chronic Pain, and why many (or in my opinion) or MOST women minimize their pain. So often women come into my office and are very depressed because walking or even sitting has become a “contact sport” – ie whenever their body is in contact with anything (clothing, furniture, human beings baring hugs) they have to pretend everything is all roses and happiness because they don’t want anyone to know how much pain they experience on a daily or moment to moment basis.
There is a huge amount of research showing that women experience more musculoskeletal pain, abdominal pain, headache and Pelvic Pain than men. Women experience this pain deeper than men, although they are less likely to be taken seriously by their doctors.
So the research has shown there is Gender Bias in regards to how doctors treat pain with women vs men. I’ve heard countless stories of women going to doctors with pain and getting the emotional eye roll from a doctor. Despite helping them make a list specifically describing their symptoms, the doctors seem to always assume that Motrin will do the trick.
I had RA and Lupus for about 9 years before I confessed to a female Rheumatologist how bad my pain really was. I got lucky. She knew I didn’t spend 6 years getting a Ph.D. in Clinical Psychology to spend all day in bed on a heating pad. So she got aggressive and had “the opioid talk.” This was in around 2004. I was the one pushing back. I was terrified.
Me:What if my body got used to the dose and it didn’t work more.
Super Rheumy: We increase the dose.
Me: But what if I get addicted?
Super Rheumy: Are you planning on taking the medication to get high?
Me: NO! I DON’T WANT TO BE OUT OF IT! I’ve spent 9 years not living, I don’t want to be out of pain but sleeping all day bc I’m stoned!
Super Rheumy: No worries. Start this on Friday, you’ll be sleepy through the weekend, by Monday you will be much happier.
Shock and awe, she was right. I woke up that Monday like a new woman. I could get out of bed and get my daughter ready for school without holding back the tears from my severe pain. When I woke up Monday I realize how much pain I was actually in! I had gotten used to having everything except my finger nails in pain. Now don’t get me wrong, I still had pain. And I experienced “breakthrough pain” (where the pain breaks through the medication) but it was so much better than before! I could go to the store. I could help my daughter with homework, cook for my family. And I wasn’t out of it.
Praise the Lord, Buddha, Heavenly Father, Allah and the AMA. I was finally not hating my life. But my disease marched on. And although my rheumie was wonderful other doctors were dubious. If she was out of town, no one in the office would refill my monthly scripts. They were all terrified that they would lose their license (even though I had never called in early, never asked for 1 pill more, and was the perfect opioid patient).
But that was almost 14 years ago. Things are different with the “opioid crisis.”
I have worked with a lot of women like me struggling with chronic pain and chronic illness. I guess they find me because of my specific situation. I KNOW what it means when you say “everything hurt’s but my hair.”
What I know from my own situation and from countless patients I’ve worked with is that patients minimize pain. Emotional and physical. Often we are afraid that our medical team will think we are “drug seeking” especially with all the talk about opioid addiction.
We see our doctors as all knowledgeable and get scared that we won’t be believed. Women have dealt with pain since they had their first menses. We dealt with doctors that thought we wanted to avoid school with cramps, and since then it’s just become a pattern with some doctors.
Some patients feel extreme shame about getting sick. We are humiliated to explain to a lot of white coats how much pain we are in. We feel it weakens us in some way. Many moons ago I read an amazing article called The Spoon Theory by Christine Miserandino. She writes about explaining how each day with Lupus is different and how the pain and energy drain is depleting.
If you don’t have Lupus, read it any way. Just substitute your pain (depression, anxiety, OCD whatever) for Lupus-it works. And then give it to your family, friends and maybe a doctor so that you all can understand that every day with chronic pain is different. But the key is the pain is always there-even if you don’t look sick.
Family. So often many chronic illnesses flare and abate. One day we are on the couch, unable to move and then the following day we wake up, feel good and overdo!
Well come on, we spent yesterday in bed today we have to get caught up-go to the store, clean the house, get more done at work, do laundry, spend quality time with our children and husbands/wives only to find we tank the next day. And our family looks at us like we are faking it. If you are sick you are sick all the time right? Not always.
What can you do?
First, tell your doctor what is really going on. Don’t minimize your pain.
There is a brilliant commercial about Endometriosis, which shows a patient on an exam table. Her OB/GYN is asking about pain before, during after her period and during sex. The patients is essentially minimizing. To the right of her is another version of her, saying “TELL HER THE TRUTH!” She finally does, and in this scenario her life changes.
Now I can’t promise this will happen but give your doc a chance to help you. But be brutally honest (write it down if you are afraid you will get side tracked). If you have to keep a diary at home of your pain level every day. Bring it. If you’ve tried this and it’s fallen on deaf ears on to my second suggestion.
If you feel your MD isn’t equipped or is dismissive CHANGE YOUR DOCTOR!
When I have moved and gotten referrals to different “great” Rheumatologists I call the office and ask to speak to someone who knows all the doctors (often a receptionist will be chatty-but always ask if they are busy). Then I say “I’m sure all the MD’s in your office are exceptional, but in addition to being exceptional I need……” Fill in what you work best with. For me, I need someone with a good bed side manor, that will understand I’m educated, have had this disease a long time, and want to be a partner in the process.
AND a good sense of humor is crucial!
So often the nurses/MA’s or receptionists will laugh and say, “OMG you want Dr X- She’s the best!” Then I ask follow ups, do they do a lot with SLE/RA overlap? How about pain management? Sometimes they don’t know details but I know that personality wise we have a better chance that we will click.
And if a doctor will HEAR you, you will be honest and less afraid. And they will send you to a pain specialist if they aren’t comfortable dealing with the big guns.
Remember, if you aren’t sure about your current specialist GET A SECOND OPINION!
Even if the doctor is a jerk, you’ll get a fresh set of eyes. Often a doctor that has treated you for years just assumes (it’s not because they are incompetent-I call it a forest/trees thing). Get a new set of eyes. If s/he has some brilliant ideas – trust your gut.
Mindfulness. I know I know- meditation is too new age hokey poky for you. Well I beg to differ. Finding even 10 minutes of a guided meditation (check out the app INSIGHT TIMER or CALM for IOS or Android) will decrease your stress and allow a lot of good neurotransmitters in your brain to flow, helping pain.
Put Neuroplasticity and Mindfulness in YouTube and you’ll find a ton of Ted Talks about how meditation changes that brain. We can prove it helps with pain, stress, depression and many other issues.
If you are willing to try and are overwhelmed by all the different apps, here is a link to an amazing 8 week at home training class. It is based on the first Mindfulness Based Stress Management course from University of Mass. This website it free and is based on the original course started in 1979 by Jon Kabat-Zinn : Palousse Mindfulness
Also check out other blog posts here on Mindfulness. It has made a huge difference in my life and the lives of my patients!
But remember mindfulness isn’t just a meditation, it is a life style. But start with meditating 10 min a day using a guided meditation and see how you do. But be patient, research shows changes take about 8 weeks.
Finally, find a support group! Finding an online support group in 1998 (on AOL lol) was my saving grace. I had women (I say women because Lupus is a disease that mostly women get- although men are starting to change the numbers of late) say things that I had only thought! I felt less crazy, I found new ways to speak to my doctors, and learned about drugs, therapies and felt HEARD!
If you are well enough to go to a group that’s even better. I know I know-taking a shower, putting on make up, getting dressed and heading into the car uses up most of your spoons (read the SPOON THEORY if you don’t understand this) but once you get there and plop into an uncomfortable chair, you will fell right at home. Everyone there can finish your sentences.
And before you leave GET PHONE NUMBERS! And give yours out- be willing to support people on bad days and they will support you.
Living with pain is a bitch. But it is possible to LIVE with it. But the first step is being honest that the pain is more than you WANT to handle. If it is screwing up your quality of life, reach out. And after you see your doctor, call a Psychotherapist that works with pain and chronic illness. We can help you tackle asking for help, listening when everyone is burned out, and know that when you say you are FINE it really means you are F’D up Insecure Neurotic and Evasive.
Yeah, I’m Fine too.
Dr Karen