finding gratitude in family and friends journey to understand my disease.
Living with a chronic disease, it can be hard some days to find something to be thankful for. Some days it feels like friends are slowly drifting away as I stayed curled up in my bed. The hardest part about living with a chronic disease is not the pain, you learn to live with the pain. It's explaining what you're going through to people who don't understand. It's taken friends and family seeing me at my worst to truly understand what is happening to me. They may not understand it, and their reactions may not be what those of us with a chronic illness expect, but we have to remember they are trying their hardest to understand something that they’ve never experienced.
Having a family member not understand is the hardest. To have them look at you and see how much you've changed in a couple years has to be hard. I used to be an outgoing, athletic optimistic person, but now sometimes I feel like my family looks at me as this lazy person who never wants to do anything. I know that is not what they think about me, but I’m definitely not the version of myself I was before I was diagnosed with Rheumatoid and Psoriatic Arthritis. The chronic pain and fatigue have been debilitating symptoms that have changed my life and many relationships. My family’s journey to understand my disease is something I think a lot of people go through, some family members understand, others don’t and some are trying really hard.
My Brother, Matt and I in Budapest
My brother has always been very understanding, he’s just now starting to see me during my flare days as we’ve lived two states apart until this past year, but he’s always been a good support person. The more he sees me at my weakest, I think the more he is understanding my pain, and for that I am so thankful. My dad has worked hard at grasping what I go through, because he experienced chronic pain himself. A couple years ago he had shingles, and I have no idea what it is like to have shingles, but I hear it is so painful people commit suicide because the pain is unbearable. He called me one day and said, "Stace, I'm sorry. I understand what you're going through, to a degree." I've never felt more close to my dad than I do now, because he understands this is more than the pain from a sports injury that you can push through and is only temporary, this is a life long pain that will never go away. My dad knows my old self is still inside of me, but I just don't have the energy to pull her out everyday.
My dad and I in Palm Springs
I also work with my brother, dad and sister-in-law. I couldn’t be more thankful than I am to have such support and understanding at work. They’ve created multiple positions for me throughout the years that have made it possible for me to work, take days off, sleep in when I need it, work from home and go to my millions of doctors appointments. In the past few years as my disease has gotten worse, I’ve realized I can’t go back to a normal 9-5 corporate job, my body cannot handle sitting in an office for that many hours in a row. But I need to work, I need to have a purpose and a reason to wake up every morning, especially when I know it contributes to the livelihood of my entire family, and the amazing people that work with us. I cannot fully put into words though what it means for my Dad, Brother and Sister-in-law to be so understanding on my bad days, and the weeks at a time I sometimes have to take off due to my flares.
In my opinion, my mom and I have had the biggest breakthrough recently in a mutual understanding of one another’s perspective of this disease and how it has altered our world. It’s been a struggle since my diagnosis 13 years ago for my mom to truly understand my chronic pain and fatigue and how it’s changed me. My mom was with me when I was diagnosed, I was in college and she drove down to Eugene from Portland, Or to be with me, but I never lived with her while I’ve had this disease. She’s always known me as this athletic social teenager, but never really saw the downfall of who I was because of this disease. She never saw the mornings in college I missed my 8 am class because I was throwing up from the chemo, or the parties I missed because I felt like I got hit by a bus from the inflammation of my joints. In her mind I’m still that happy healthy 18 year old who has her whole life ahead of her. After college I moved to Seattle for 10 years, so she hasn’t seen me cancel my plans because I’m too tired on a Friday night, or spend my weekends on the couch crying in pain recovering from a night out with friends. She hasn’t seen this part of me, and that’s not her fault. She has ALWAYS been there for me, she’s listened to me on the phone crying day after day, but I think it was hard for her brain to truly grasp what I was going through because of the distance.
My Mom and I at her 60th Birthday
Since I’ve moved back home we have had a lot of tough conversations in the past year, and I know she’s trying hard to understand, and I have to cut her slack that she, nor anyone will never truly understand, and that’s OK. We’ve talked about how every mother has hopes and dreams for their child, and they want their child to be happy and healthy. I am not always happy, with this disease comes depression and isolation. Society creates these social norms and milestones that parents have for their kids, and a lot of people have for themselves. My mom watches as my brother has gotten married and welcomed his first child and I’m not there yet. I haven’t hit some of those “milestones” parents yearn for their children to meet, because I’m on a different path. Hearing my mom talk about how shes trying to wrapping her brain around me being on a different path was hard, but really beneficial. No mother wants to see her adult child in so much pain all the time, in bed not able to walk or be social with her the family. I never saw it that way, how hard it is from their perspective, that feeling of helplessness can break your heart. That’s all I can ask for is her to try to understand; that I’m carrying around this extra baggage that doesn’t fit down the path we both imagined for my life. It’s been hard because I had to tell her, I am struggling with the fact that I haven’t hit these milestones either. I see my friends getting married and having children and I feel like I’m miles behind them because my disease has created so many roadblocks. We both have to come to terms that whatever is going to happen in my life will happen when it’s the right time. We have to adjust milestones, and timelines and not compare them to my Brother’s or my friends, because it doesn’t do us any good. Letting go of these expectations is like losing a hundred pound weight that’s been on our shoulders.
My mom is my best friend, but there’s always been this sort of elephant in the room, where the one thing I needed her most for we couldn’t seem to get on the right page. My mom has ALWAYS been there for me emotionally, but because of that physical distance it has caused a challenge for her to fully grasp the gravity of my pain.
During a back flare I can’t bend over to feed the Doctor, so I just drop it on the floor for him
It wasn’t until I started having back flares in the past three years that I physically needed my mom. When these happen I flat out cannot take care of myself. I can barley get up to go to the bathroom let alone bend over to feed my pup, Doctor Gus, or feed myself. My mom, the saint that she is, has flown from California multiple times to Seattle and Portland to take care of me. She’s seen me screaming in agony just trying to get to the bathroom, and she’s now seen me sobbing myself to sleep from the pain. I woke up one morning, I was sleeping on the couch because my bed was too uncomfortable, and she had left me a get better card, and in that moment I knew that she got it. This page of our book, this journey to understand me, we were finally standing in the same place at the same time and I sat curled up and cried it meant so much to me that the “distance” was gone. She was there for me in every way that I needed her, physically and emotionally. As a parent you try to steer your child in the right direction, you try to guide them toward happiness, and she let go in the right way. She let go in knowing we cannot control this part of my journey we have to follow it and adapt.
That was probably one of my worst back flares and the most pain I’ve ever experienced in my life, but I’m so thankful my mom was there with me, because she finally saw my pain first hand, and although I know she felt helpless, she did more for me that week than she knows. I’d go through it again if it helped my family or friends understand just a fraction of what I go through, or if it helped me understand what they go through as my support system. Mom if you read this, I love you. I know you've tried to understand and it's not an easy thing to grasp, I love you for never giving up on me and no matter what, you’re always there for me, so thank you.
As hard as it is to share this and the struggles me and my family have faced because of my disease, and I don’t want to hurt my family or upset them, but I don’t feel like we’re the only ones who struggle with understanding how pain affects everyone. It’s worth sharing this if it can help someone let go of the frustration and be thankful for the little things family and friends do. For most, pain is something that comes and goes. It's hard to grasp the concept that someone can be in physical pain every single day. That one day you can bathe and take care of yourself and the next day you're trapped in bed crawling to your bathroom crying because you can't walk. Our bodies are mysteries. I’ve learned from having conversations with my family that they feel helpless, and I can do a better job of communicating with them what I need from them when I’m having a flare.
This is my bed when I have a back flare. Doctor G is keeping my spot warm.
Communication is key, and it’s hard when pain takes over and you’re in a pain fog to express to your caregivers what exactly you need can be a challenge. My dad never really knows what to do but let me push through and give me the space and time to feel better. He can always tell just by looking at me if I don’t feel well, and I actually love that. But I noticed he doesn’t always know what else to say to me, he told me he knows, “sorry” doesn’t do much, and neither does “feel better”, and that is OK. The acknowledgement that I don’t feel well tells me he understands. I take responsibility for not conveying to them what I need, because how are they supposed to know. It’s just hard to always be asking for something from people, even when it’s family. I finally told them when I’m having a flare I need you to feed me, check if I need anything, i.e. water, Ice, or a heating pad etc. and help take care of Doctor Gus, my dog. I can’t imagine, what it may feel like to my family to see me at my lowest, but it can help them to know they are helping me if I clearly tell them what I need.
It's frustrating to have people so close to you not understand your disease and your chronic pain, but getting upset or frustrated with them when they are trying to understand isn’t fair. I'm learning I need to explain what I’m feeling and what I need from them better. I need to set limits and communicate to them, and not get frustrated, because they don’t understand. It's not their fault they don't understand, but I'm happy that they are trying to grasp what I'm going through, it’s the least I can ask for.
I’m thankful for my friends and family that haven’t disappeared on me, the ones who treat me like I’m not sick at all, and those that support me at my weakest. I’m thankful for the eternal patience of my family that is on this roller coaster of chronic pain with me and that they love me through the good days, the painful days and the ones that end in tears.
The biggest thing I’ve learned this year is to be thankful for those around me who make the effort to support me in whatever shape or form it may be. Whether it’s a conversation, a glass of water, taking my dog for a walk, making me a meal, a text checking in on me, or a happy hour when I’m feeling well, I appreciate it more than you may know. So thank you from the bottom of my heart!
xx,
Staci
