November 17, 2022
One thing I really have to focus on while I’m on this chronic illness journey is the ability to be positive. It is easier to be positive on the good days, not while battling a flare up…especially if it’s been a long one. I’ve been through some really long flare-ups and during those times finding hope and being positive doesn’t come naturally to me, but it is extremely important. While I hate having lupus, there are some really wonderful benefits and growth opportunities that have come from it.
For me, one of the most difficult parts of lupus is the lack of control I have. I have no idea when a flare is going to come or if I’ll be strong enough to participate in family events and travel. This lack of control has really helped me be more present in my life. Because I have no idea what tomorrow will bring I am more grateful for today and I am able to soak in my family and what I can do in this moment. This is something that is a constant battle for me, just ask my therapist! But, I’m growing and embracing the growth even with little control!
I am grateful for homeopathic and pharmaceutical help. I am pro BOTH. I also believe that every person is different and what works for me might not work for you. What works for me now may not be helpful in the future. It’s a constant evaluation. Without the scientific advances on treatments for lupus I would not have as many good days or hope for remission. I’m currently taking Benlysta and on steroids (plus a million other things). Without these medications I would have fevers daily, be uncontrollably fatigued, and my kidneys would be going bonkers. I also need to be very conscious of what I’m eating and my environment. If I’m eating trash and in an unhealthy environment (mold, dust, unhealthy air quality), it depletes my spoons and getting to a healthy place is harder. I try to focus on supplements, food, tolerable exercises, therapy, medications, and prayer/my relationship with God to keep healthy in body, mind and spirit. Lupus has helped make these things a big priority in my daily life. I’m not sure I would be as disciplined if it weren’t for lupus!
I am a mom to two boys 11 and 7. While a lot of time having lupus and being a mom feels like a huge disadvantage, it does have its positives. I have had autoimmune diseases for both of my boys my whole life. So, they have never seen a totally healthy mom. I think having chronic illness has taught my boys empathy and has caused them to be more flexible in plans. They have seen their mom in bed for months, they see me take shots and organize medications, they were my biggest cheerleaders pre and post total hip replacement, and when they see someone hurt they are there to provide love, support or bandages. They understand the importance of rest and have learned to listen to their bodies’ needs, because they see mom do it. I try to show them that while chronic illness is not fun, it has made me stronger and a better person.
One huge blessing has been my instagram page @Chronicallyillkrissy. It has reminded me I am not alone. Seeing others fight and go through similar things has been so healing and empowering. It has given me friends who understand. Feeling understood was something I have struggled with the past 12 years. So, having a safe place where people “get it” has been a game changer in my life. I highly recommend finding a support group or starting a page where you can be yourself and be accepted!
I wish lupus was not a part of my life, but as I reflect I can see that it isn’t all bad. It has helped me surrender control, be more disciplined in my diet, mental and spiritual health. It has helped my boys have empathy and flexibility, and it has helped me connect with others. Lupus has made me stronger.
By Krissy Stephenson
Krissy Stephenson has been living with chronic illnesses for over 12 years. Her full time job is managing her health and household with a supportive husband, two boys and 2 dogs. For Krissy’s full lupus story, watch Season 2, Episode #6 of the #YourStoryOurFight Podcast at lupusla.org/podcast! You can also watch the full episode here, on Lupus LA’s YouTube Channel.