May is Lupus Awareness Month. Many people are unaware of what Systemic Lupus is, but those of us that struggle with it know that it is an inflammatory disease that occurs when your immune system attacks various body systems including your kidneys, joints, skin, blood cells, brain, heart and lungs.
Lupus is a tricky Chronic Illness to diagnose because there are so many different symptoms that can mimic many different illnesses. I have struggled with Lupus for about 19 years.My 18 year old daughter was diagnosed with Fibromyalgia when she was 14, by 16 she was diagnosed with Lupus as well. My mother, sister and all the women on my mother’s side of the family had Lupus (as far back as records can go). I refer to it as “Our Family Disease”. In addition to Lupus I have Rheumatoid Arthritis, an autoimmune disease that attacks predominately the joints. RA was discovered in all the men on my Mother’s side of the family. . I’m convinced because I am the over achiever and got the Ph.D. that I managed to get both diseases (as well as a few other autoimmune diseases thrown in for good measure!).
Luckily, because the SLE (Systemic Lupus) was so prevalent in my family tree when I became symptomatic they caught it within a month of my first symptom. Most people are not quite as lucky and they end up seeing multiple doctors for many years before they get one that can put all the puzzle pieces together and get an accurate diagnosis. While they wait, these individuals struggle with joint pain, fatigue, rashes, photosensitivity (problems being out in the sun), Pleurisy (severe chest pain), dry eyes, dry mouth, confusion, headaches, and a multitude of other painful symptoms. Most of the time, one of the worst symptoms is that Lupus, like many other chronic illness is a “Silent Disease”. Meaning that most of the time I look fine physically fine. Even well, especially if I have had a heavy steroid dose, which tends to pinken up the cheeks, and give you a bit of an energy boost, in addition to a real hit of the “crankies.”
There are many types of Chronic Illnesses besides Lupus and many of these diseases cause severe pain, fatigue, and chronically being told that it is “all in your head ” again because many people with silent diseases look SO damn good.
The symptom that is often overlooked is the big “D.” Depression.
Let’s quickly look at statistics (hey guys, I’m a shrink…. what do you expect?). Here are the statistics I found on Depression rates on various chronic illnesses. Please remember these are approximate stats – because of the stigma of mental illness many people don’t tell their specialists that they are depressed, or are experiencing unusual symptoms (problems sleeping, concentrating, change in eating, irritability etc).All of these things can be explained away by the diseases themselves.
- Multiple Sclerosis: 40% experience Depression
- Diabetes: 25% experience Depression
- Chronic Pain Syndrome: 30-54% Depression
- Parkinson’s Disease: 40% experience Depression
- Heart Attack 40-50% experience Depression
- Coronary Artery Disease (without heart attack) 18-20% experience Depression
- Stroke: 10%-27% Experience Depression
- Cancer: 25% experience Depression (yes, I realize some put Cancer in a different category, but for the purpose of this article, let’s let that go)
The bottom line is that when individuals experience Chronic illness approximately 15-60% become depressed at some point during their illness. My personal experience with Depression while having Lupus, RA and Fibromyalgia is that my feelings of depression emerge when I feel out of control. Those times for me are when I’m experiencing the following:
1. FLARES: Regardless of what disease you have, typical there is an ebb and flow to your disease. Sometimes you feel better, other times when your disease is “Flaring” you are in pain, possibly bed ridden, unable to work or participate in your life. This is very confusing for family and friends because they might ask you to go out to lunch on Thursday. Well the bottom line is you don’t know how you are going to feel Thursday. So, you either agree to the luncheon, hope you feel well, if you don’t you bail. This causes people to become angry and disbelieve that you are truly sick on this particular day since yesterday you looked and felt great. So often people with these diseases tend to stop agreeing to go out, in case they wake up and have a bad day. This leads to ISOLATION.
2. ISOLATION: When sick, often we isolate because we feel that no one wants to hear our sad (and often repetitive talel) of being in pain, doctor’s visits, new symptoms, web searches for new medications, etc. So we tend to pull away from people or we lie and tell our support system we are “fine.” When we are alone this leads to an increase in Depression and Fear.Depression because we feel as though we are in bed watching the world float past as if we were in a fish bowl. Afraid because we assume that eventually our family and friends will get sick and tired of our being sick and tired. The y will bet bored with the repetitive issues, complaints, fear, side effects of drugs, or the lack of drugs or research.
3. FINANCIAL ISSUES: When I am unable to work (bc of my disease) I worry about paying the bills. Also, after a flare or an issue that has lead to expensive testing, joint replacement or hospitalization I worry about Health Insurance and what they WON’T cover. The majority of bankruptcies are because of health crises. Worrying about money can cause more anxiety, depression, and a lot of sleepless nights. Those sleepless nights exacerbate my Fibromyalgia and the stress exacerbates my Lupus so I flare…the flare then causes me to feel out of control and leads to more Depression.
Are you seeing a pattern yet?
4. FAILURE AS A PARENT: This issue is a biggie for Chronic Illness parents. I wrote about it extensively in an earlier blog. The bottom line is that if you are trying to parent when you feel sick all the time it is difficult. You worry that your kids will grow up feeling neglected, angry, and perhaps Children’s Protective Services will some how discover what a crap parent you feel you are and come and take your kids from you (because of that day, you remember, when even your hair hurt and your teen daughter forgot to tell you that she had a HUGE project due TOMORROW and needed to get to Wal-Mart ASAP to buy $90 worth of supplies and you have just taken a handful of pain pills and shouldn’t drive and…you… wait for it…YELLED AT HER). So because of this and a million other times that we couldn’t drive carpool, needed to sleep and couldn’t make dinner so you told the kids to make sandwiches, those days when your nails hurt and you weren’t able to throw a ball outside with your child. So you had a neighbor play ball and you watched (out of the sun ) from the window, cheering them on with tears streaming down your cheeks. We beat ourselves up because we think we are parenting poorly. When in reality, we are just parenting DIFFERENTLY.
5 .PAIN. Pain often makes people sad. But CONSTANT pain can make people downright depressed. According to the American Pain Foundation, 32 million people in the US report having constant pain lasting more than 1 year. 25-50% of those individuals have told their doctor they are depressed. Pain, besides being seriously uncomfortable, limits our independence. When we are dependent on other people to do things we eventually feel depressed and guilty for being a burden. So we stop asking…which leads to isolation…and feelings of failure…which will lead to yet more depression.
If you are in Pain you have more irritability, anxiety and anger. This leads to non-stop stress. Which makes you angry at yourself, your family and friends, people who aren’t sick (I know we don’t want to admit that one, but sometimes it is there. You have friends that are healthy and can play with their kids, don’t need to have their 3rd grader do homework on your bed because you can’t drag your body to their bedrooms or the kitchen table), the insurance companies who over charge for meds, who charge you large amounts for policies, and fight you for every new drug that your doctor feels might be your “miracle drug” because it is experimental, not generic, or the wrong color pill. You are really mad at your body for going dyslexic on you and creating cells that you weren’t born with, or maybe you were but you didn’t ask them to wake up NOW! , And a lot of other things that, depending on the day, make you feel ticked off (and that word was the kindest one I could put in a PG blog).
6.FATIGUE: When you are in pain, especially at night, you aren’t sleeping which leads to excessive fatigue. Some of the Invisible Illnesses such as Lupus, RA, Fibromyalgia, etc have fatigue listed as a symptom of the disease. Fatigue is, in itself, a symptom of Depression. But often if you are exhausted all the time it can exacerbate your pain, and increase your depression.
Let’s sum it up : FLARES + ISOLATION + FINANCES + FAILURE +PAIN + FATIGUE = huge emotional upheaval which leads to DEPRESSION.
I am sure that you all have lots of other triggers. What triggers you into feeling blue? Have you spoken to your specialist about it? For those of you that are afraid to talk to your specialist, why is that? Are you afraid of what they will think if you explain you are feeling depressed? Let me give you a tip – after spending over 15 years working as a therapist, and a bit longer as a patient, your specialist already expects you to be depressed. If you aren’t s/he probably thinks you are minimizing your emotional feelings. ASK FOR A REFERRAL! And make sure you find someone who works with Chronic Illness patients! There are a lot of great Psychologists and Psychotherapists, but it would help if someone understood what YOU are going through. Now I don’t believe that in order to get help with a divorce you have to see a shrink that went through a divorce…but with chronic illness I think it does help to know that this person has either walked in your shoes or specializes in this area. Just my humble opinion.
A Few Tips for Dealing with Depression from Chronic Illness/ Chronic Pain
As we’ve learned above, the FLARES + ISOLATION + FINANCES + FAILURE +PAIN + FATIGUE creates a huge vicious cycle. Chronic illness or Cancer can bring on bouts of depression simply from the symptoms that the disease creates and the side effects of the drugs they are giving you to “improve your quality of life.” This in turn can often lead to your physical condition taking a dive which may ultimately interfere with the treatment of the disease.
So what helps? To me the most important thing is GOOD communication with your primary physician (and by this I mean the doctor that is helping you with your illness,not necessarily your GP or Internist). Be honest with her/ him about how you feel physically and emotionally. Many people, especially men, tend to minimize their feelings about their illness. This is a major mistake. If you hurt, TELL THEM . And use the 1-10 scale. They won’t think less of you if today you are at an 8. It doesn’t mean you are less of a “man” or “less brave.” You are just in a heck of a lot of pain today. TELL THEM!
Learn how to best deal with the treatments (this connects with having good communication with your MD). If S/he has put you on a medication that makes you vomit, increases your fatigue or doesn’t help with the pain, TELL THEM! They aren’t psychic…they don’t know if you don’t speak up. If it’s hard for you to speak up bring a friend with you to the doctor’s appointment. Have them bring a yellow pad with a series of questions, new side effects, concerns, and have your friend write down all the things they say so you can focus on them and not have to remember everything they are telling you. Trust me, I have a Ph.D. and in the beginning I couldn’t remember half of what they told me. So when I could I took notes.When my wrist needed to be replaced and I couldn’t write I brought a friend or my daughter to write everything down.Trust me….it helps .AND often, having a friend there hearing what the doctor is saying can be a real help when you need an “eye-witness” or you need someone to be your memory.
Most importantly tell the doctor as soon as you start feeling blue. Ask for a recommendation. Medication is helpful, but often having a therapist that understands chronic pain or chronic illness is a huge benefit. You will need someone in your court that knows you aren’t med seeking. That understands why you minimize. That will give you hope when the last bit of hope you had, just took a bus to New York City, with no return ticket!
Remember, pain is pain. It doesn’t matter whether it is chronic pain or cancer pain. It sucks and it affects everything you do when you have a bad day. It can knock your self-esteem down to its knees. Does that mean you should give up? Hell no! Remember, you will have good days and bad days. Enjoy the good days, and hate the bad days. But know that with a good medical and therapeutic team backing you up, it will help you on the bad days. Also….in addition to finding a therapist, look for a support group for your illness. Sometimes having a list of numbers of people you can call when you are having a bad day is very helpful. You don’t have to start from the beginning…they will get it right away.
Gentle hugs,
Dr Karen