The Emotional Effects of Psoriatic Arthritis

After I got over the initial shock and denial of my diagnosis of psoriatic arthritis (PsA), It swiftly came to my attention how much this condition impacts every single aspect of daily life. It is not a disease that is limited to physical pain. The emotional effects of PsA are far-reaching. The emotional stumbling blocks of PsA One of the hardest side effects to deal with emotionally is the loss of control and feelings of helplessness. These feelings can range from physical limitations, such as difficulty opening lids and holding coffee mugs to out-of-control feelings of anxiety, depression, and uselessness. I'd like to break down my own emotional stumbling blocks and offer my own insight into coping through the emotional impact of managing life with this chronic condition. A lesson in parenting and pain I remember a particularly trying day early in my diagnosis. Before I really knew the impact of all my physical limitations. I am a mother to three young children and I was busily trying to get their breakfast together as I had done nearly every day of their lives for the past 5 years. I attempted to lift the jug of milk and it fell from my hand. The effects splattered all over my kitchen. It took every ounce of strength in me not to just melt right into a puddle of tears on the floor. I would have had it not been for the 3 sets of little eyes watching me, waiting to see how I would react. I only let the tears slide out of my eyes once my youngest, at just 2 years, whispered, “There’s no use crying over spilled milk, Mommy.” It became very evident that while I could no longer reliably control the muscles in my hands, I could control my reactions. I can choose to wallow in my own self-pity and helplessness or I can choose to make the most of every day. It is in this ability to choose that I am able to find control in my life again. A look at the emotional toll of PsA The emotional effects of PsA are real. Anxiety, depression, mood swings, and anger are all part of this disease. This even includes the side effects of many of the medications we take. Here are a few suggestions for handling the emotional effects of PsA. Keep a journal. Regular introspective journaling helps you to keep in touch with what your head is thinking and your heart is feeling. Free journaling helps clear your mind and can offer a keen insight into making sense of complex emotions. Journaling also helps your mind sort out fact from fiction in the ever-changing landscape of living with this disease. Try yoga.Some days, even simple movements can feel near impossible. Studies show that even doing a little physical activity can have big benefits, especially for those with chronic illnesses. Doing a gentle form of yoga-like Ananda Yoga or Hatha Yoga regularly can help loosen tight muscles, relieve aching joints, and calm inflammation. Please be sure to check with your doctor before beginning yoga or any exercise regime. Talk it out. Do not underestimate the power of a good talk with a trusted friend. Sure, they may not be a fellow PsA warrior, but a trusted friend can listen and help you feel less alone. Oftentimes, those outside of the disease can offer unique insight and understanding in ways those of us who live with it every day cannot. Join a support group. There are many local and online support groups willing to help, listen, and empathize with your pain and frustration. Facebook and other similar social media sites have many groups of people, around the world, that can help you understand this disease, offer support, and feel less alone. Seek medical advice. If at any time, you feel the emotions are too much to bear, have thoughts of suicide, or of harming yourself, do not hesitate to seek medical help. If you feel depressed, or unlike yourself be sure to discuss these feelings with your doctor and get the help you need. Prioritize your feelings It is important to recognize the signs and symptoms and be proactive in fighting them. If, like me, you are struggling with the emotional aspects of PsA, I encourage you to find your own ways to take control back. You're worth taking active steps to ensure your emotional health and well-being. Do it as much for yourself as for those who love you. After all, you never know what little sets of eyes are watching you, just waiting to be inspired. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Psoriatic arthritis: it's all about swollen joints and rashes, right? If only. I've lived with my disease for more years than I care to count and I am still learning how to deal with its quirks every single week. My diagnosis might have been slightly different from the norm. I have had a few forms of arthritis since I was just 11 years old. What they don't tell you about during diagnosis When I developed the tell-tale rashes, it was a case of a being sent to a dermatologist to confirm what my rheumatology consultant already suspected. A few years down the line today and I can appreciate there were a number of things not mentioned that perhaps should have been. If you have been recently diagnosed or are early on in your PsA journey, here's what I wish I knew back then. Coping with chronic fatigue Nobody warned me about how debilitating chronic fatigue could be. At the time of my PsA diagnosis, I had lived with arthritis for over ten years and tiredness hadn't really been an issue. Yes, constant pain or restricted movement would tire me out but the chronic fatigue that came with my psoriatic arthritis hit me like a truck. I wasn't prepared for it and wasted months searching for answers before it was associated with my disease. Tips for coping: Should this be something you experience, my advice would be to rest when your body tells you to rest and be kind to yourself. Trying to run before you can walk will only prolong the effects of chronic fatigue. The strain on family life Personally, I cannot overemphasize this one enough. Psoriatic arthritis will find a way to weave its claws into everything you do. Last year was a difficult year for me, dealing with my largest flare since I was a child. It was only as an adult dealing with such a deterioration in my condition that I appreciated how impacting it could be. We had started a family, with my son arriving at the start of 2019 and the flare meant there were days when I couldn't help out or even hold my son. At times, I couldn't assist with night-feeds or the medication sedated me so heavily that I didn't wake to his cries. It broke my heart and for a period, I had never felt so useless. A burden. I wasn't prepared for that situation because for five years prior I was healthy - but I could have been better equipped. Tips for coping: Talk to your partner and family. Discuss scenarios, tell them how you feel and try and minimize any surprises as best you can by having a plan. Even something as simple as 'what do we do if I wake up, you're at work and I can't get out of bed to attend to the baby?' It's a really difficult thing to talk about but I promise you it's better than the alternative and having an emergency when you're already in pain. [native] The impact of depression and mental health Mental health alongside chronic illness is something that's close to my heart and that I actively campaign on to raise awareness. Not enough support, preparation or guidance is given to people living with chronic illness should mental health become an issue. It's not just the pain, mobility issues, job insecurity or strains on relationships that psoriatic arthritis can cause that leads to depression. There's a visible element with rashes, plaques and joint deformity that can dent the confidence of even the most outgoing people. When I was younger, my disability never bothered me. If anything, it was a challenge to prove people wrong and accomplish as much as I could as 'that child with the old person's disease'. However, as I've grown older, responsibilities have increased and life has left its scars, I have found it much harder to maintain such a positive outlook. Living with psoriatic arthritis is tough and we are not robots, we all have our breaking point. Tips for coping: Try and educate yourself on what support is available before you need it. Never be too proud or ashamed to ask for help and learn the early warning signs so you can get help before it's really needed. According to The Depression Project, some common signs of depression are: Spending all day in bed Being emotionally distant Overeating or not eating at all Social Isolation Skipping work to sleep Lack of personal care (i.e. not showering) It's important to talk about your psoriatic arthritis Talk to people about your condition and how you are feeling and most importantly, look after yourself. Afterall, psoriatic arthritis is so much more than swollen joints and rashes. Like it or not making errors in judgment or mistakes in regards to how we manage our chronic illnesses is something we all will do at one time or another. Diseases like psoriatic arthritis can be so unpredictable that it is impossible to predict all the activities that increase our pain. The reality is that everything we do increases our pain to some degree. However there are some ways to limit how much of a beating our bodies will receive by recognizing when to slow down or utilizing different therapies, mobility aids, or medications. Unfortunately, none of them are foolproof because of an ever changing level of pain and physical ability. For longer than I would like to admit, I have emotionally beaten myself up over every mistake or error in judgment that I have made that has resulted with additional pain. Should have, would have How many times have you caught yourself saying something like: “I should have used my wheelchair” or “If only I hadn’t forgotten my pain medication?” Sometimes I feel like my body can handle walking farther than normal, so I do it. Of course I pay the price with an elevated pain level. While I am obsessed with lists and usually remember to bring along the things I need the most - like my pain meds - I am human and sometimes forget an item or two. No matter what it was that I did to increase my pain I would always send myself into an emotional funk by constantly berating myself. As a result I fell deeper into depression and often felt like a failure. The guilt of making an error would eat at me for days and sometimes weeks. Unless I was willing to live my life in misery, something had to change. Turning the tables The problem with those beatings was that my focus was on my negative emotions and not the mistake or how I could avoid repeating it. It took a conscious effort to address my errors without emotion to be able to learn from them. For example: If I forgot to pack pain meds for an outing my brain would fill with thoughts like “I am stupid” or “I should have known better”. This doesn’t solve the problem. First I have to acknowledge my mistake. Then accept that I made an error and its consequences. Next I forgive myself. At that point my mind is free to think of ways to avoid repeating this mistake. When I last forgot my pain meds, I reminded myself that making lists and checking them before leaving the house is imperative. I am not perfect. I still make mistakes, but I have stopped emotionally torturing myself. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"], Sometimes, laughter really is the best medicine. And when you have psoriatic arthritis, easing pain and relieving stress is always welcome. Just fake it In August 2015, I attended “How to Dance in the Rain: Rx for Mind, Body, and Spirit,” an autoimmune conference hosted by the Scleroderma Foundation-Michigan Chapter. One of the conference speakers, Dr. Ashraf Sadeghi-Girgis, naturopathic medicine specialist and a certified stress management therapist from Grand Rapids, Mich., really caught my attention. She began her “Fake It Well” presentation by having the audience stand and fake a few deep belly laughs. The audience, including me, felt very silly, but our fake belly laughs soon turned into real laughter. Dr. Sadeghi-Girgis said laughter therapy has all kinds of good health benefits for those with chronic illness, including: Reduces stress hormones; Improves circulation; Exercises muscles; Helps to alleviate depression and anxiety; and Decreases pain intensity. She explained that deep belly laughs are the ones that make a real difference, but if you can’t bring out those authentic, big laughs, then don’t give up. She said that even though our minds can tell the difference between a real and fake laughter, our bodies can’t. Even if your fake laughs don’t turn into real laughter, you’re still reaping the benefits. Long-term benefits of laughter The Mayo Clinic agrees that laughter has some great benefits. “Stress relief from laughter? It's no joke” explains how laughter can also have these long-term effects: Improving your immune system because positive thoughts can release a group of compounds that act as neurotransmitters to help fight stress and possibly more serious illnesses; Relieving pain by allowing your body to produce its own natural painkillers; Increasing your ability to cope in difficult situations; and Improving your mood by helping with depression and anxiety. Bring humor into your life With psoriatic arthritis, we look for ways to take control, especially when we feel we have none. Faking laughter is one great way to trick our bodies into feeling better without added medicine. Here are some tips to get you laughing: Find a group or account on social media that is dedicated to your type of humor. Memes, puns and jokes are at your fingertips. You can even find a group that features health humor. Keep a few funny movies on hand that you can go to for a quick laugh. I recommend ones that you’ve seen often and can recite lines by heart. That way, you can become part of the movie and immerse yourself even more. Keep a joke book on your nightstand. Go see a comedy show and support your local comics. If you can’t get out, then watch your favorite comedian on YouTube or TV. Turn the radio dial to a comedy station. Meet in person or on the phone with friends or family to reminisce some funny stories from your childhood. Just be sure to not laugh at someone else’s expense. Hang out with kids. They really do say the darndest things. Get a mirror, stick your tongue out, and watch yourself make funny faces. And if you still can’t crack a smile, then just do what Dr. Sadeghi-Girgis recommends: Fake it until you make it. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] There are a great many difficult parts of living with psoriatic arthritis. There is the pain, joint damage, fatigue, and complications from the medicines just to name a few. All of which combined can cause a great deal of stress and anxiety. While obviously challenging and painful, these challenges don’t quite merit the dubious distinction of “Most Difficult.” That honor is reserved for one thing, uncertainty. What makes uncertainty worse than all the others? I am a natural planner. Not that I’m necessarily good at making plans. Rather, I like having everything laid out. I like to know what is going to happen, what is on the agenda for the day. When you live with psoriatic arthritis, planning becomes very difficult. Most of the time, I don’t know each day or even throughout the day, what I’m going to be capable of doing. My loved ones and myself have been disappointed on more than one occasion because I thought my body would cooperate with an activity, only to find out that it wouldn’t. When you live with the uncertainty of what kind of body you will have from day to day, it makes planning activities very difficult. An uncertain future filled with questions Not only do I enjoy planning my day, I also work very hard to plan for the future. With psoriatic arthritis, the future feels like one big question mark. This uncertainty makes me angry, frustrated, and above all, scared. I can’t plan for such an uncertain future. I don’t know what my life will look like tomorrow, how can I know what it will look like in a year? Or five? Or even ten? Will I find a medicine that will stop the damage? If I do, how long will it work? Do I have to plan for life in a wheelchair? Will I have to sell my 2-story house in favor of a ranch? I don’t have the answers to these questions and they all combine and lead to more questions, more uncertainty. Amid all of the questions, what do I know? I have reason to hope- The medical community is making great strides every day in diagnosing and treating psoriatic arthritis. Our society is more accepting than ever in our history of people living with disabilities of all kinds. There is a whole world of products designed to make living with psoriatic arthritis easier and less painful. All of these give me reason to hope that the future doesn’t have to be so uncertain. I have a powerful and supportive community- Since my diagnosis, I have been blessed with the love and support of an amazing online community of people. You lovely lot have shared your knowledge, understood my pain, and let me vent my frustrations in a safe judgment-free environment. I am amazed every day by the strength and determination to live shown by my fellow warriors. I have faith- Yes, sometimes it is hard and my faith falters. But I know in my heart that God has a plan for me. A plan that allows me to make a difference for others. A plan that allows me to use my gifts to make the burden that others carry a little lighter. While I may not know all of the answers, there is someone that does. When I am feeling uncertain about my future with this disease, I take comfort in that. Even though living with PsA is difficult When I am struggling with the most difficult part of this disease—the uncertainty—I hold fast to what I do know. These three pillars; faith, hope, and support see me through the darkness and shed light on valuable answers. I may not get the answers to all of my questions and uncertainty, but there is comfort to be had in the knowledge that I am not alone. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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