Living with a chronic illness like CVID is challenging to say the least. Learning how to handle and cope with it is a process — it doesn’t happen right away. However, you will feel more empowered and in control if create your CVID support team. Let’s explore how we can plant the seeds for a support team that will grow with you as you learn to manage your diagnosis.
1. Recruit Your Family
You may (or may not) have reached the point where you are capable of managing your CVID symptoms, infusions and all of the other fun stuff that comes along with this diagnosis. Either way, I encourage you to include your family when creating your CVID support team. Often family members are just as shocked or maybe even devastated as you are when you initially receive your diagnosis. However, they may not fully understand the condition, but are looking for ways to help you.
I encourage you to discuss what you know about CVID with your family. Share your research, your doctor’s appointment notes and your treatment details. If you feel comfortable, you can even invite them along to support you when you receive your first IVIG infusion or SCIG infusion. Involving them in the treatment process helps them feel less helpless and you will benefit from their support. I know just having my mom there helped this wimp deal with all the needles and side effects from my infusions.
2. Include Your Friends When You Create Your Support Team
Your friends may be the most clueless when it comes to your CVID diagnosis through no fault of their own. I know my friends all live busy lives with challenges sometimes less or more severe than CVID. I have close friends that I talk or text with daily or numerous times weekly, but I also have friends I’m just as close with that I may only get the chance to talk with once a week or a few times a month.
Inform Your Friends
Take the time to tell your friends about your diagnosis and treatment. Answer any questions they might have and explain that you are just beginning this journey so you are unsure of exactly how you will respond to treatment. Some of my friendships had already been affected because of how sick I was before my diagnosis. That was difficult and an often lonely time for me not only because I saw less of my friends, but I was isolating myself because of depressed feelings.Take the time to tell your friends about your diagnosis and treatment. Answer any questions they might have and explain that you are just beginning this journey so you are unsure of exactly how you will respond to treatment. Click To Tweet
However, as I informed each friend about my diagnosis I reassured them I still cared about them, wanted updates on their lives and to call me anytime they wanted. If I wasn’t feeling up to talking at that moment I wouldn’t answer but texted them to let them know I was still alright but not feeling well. Other times, I answered and asked them if they minded if I called them back later when I was feeling better.
Friends Can Offer Different Kinds of Support that You Need
I have seen each of my close friends react to my diagnosis in different, but equally supportive, ways. Diane and I text frequently and she encourages me to walk with her and stay positive. Adrienne and I also text and talk frequently. She supports me by asking me inquisitive and thought provoking questions to which she knows will encourage my personal growth. Michelle calls to check in in her non-invasive way, especially when she hasn’t heard from me in sometime. Lee drops by with thoughtful little “perk-me-up” gifts and texts me funny memes!
I have other friends, some of my oldest, that I know think of me often and when we talk it’s usually not about CVID but just a good ole’ normal catch-up conversation that brightens my day. I encourage you to take a moment to list out your friends and the ways in which they have supported you. CVID can be a lonely disease, but I bet you’ll be surprised at just how much you depend on your friends’ support and what an important part they can play when you create your CVID support team.
Here’s a wonderful article that you may choose to share with a friend who would like more information on how they can support you. This is also an article that you could simply hand your friends if you’re more comfortable initiating the conversation that way.
3. Search Out Support Groups
One of the first things I researched after learning I had CVID were support groups. There weren’t many local support groups here in Kansas City specifically for CVID and/or Primary Immune Deficiencies, but there were for chronic illness.
The Mayo clinic says this about the importance of support groups for those dealing with chronic illnesses:
For many people, a health-related support group may fill a gap between medical treatment and the need for emotional support. A person’s relationship with a doctor or other medical personnel may not provide adequate emotional support, and a person’s family and friends may not understand the impact of a disease or treatment. A support group among people with shared experiences may function as a bridge between medical and emotional needs.
I suggest asking your doctor, neighbors and friends, and a google search for local support groups for both PI and chronic illness in your area. Many support groups meet at churches or local community facilities. Especially when you are first diagnosed, such support groups are a place where you can feel comfortable sharing and even whining about your struggles with like-minded people.
Local Support Groups Through IDF
The Immune Deficiency Foundation provides a wonderful option for support groups called IDF Get Connected Groups.
Per the IDF’s site:
IDF Get Connected Groups are designed to connect individuals diagnosed with primary immunodeficiency diseases and family members in their local communities. The meetings can occur at a local community room, library, coffee shop, or other venue. Through IDF Get Connected Groups, individuals and families living with primary immunodeficiency diseases can connect to share experiences, receive information, and gain support. These groups do not include medical presentations or industry exhibits.
Click here to view upcoming IDF Get Connected Groups on the IDF Calendar of Events. If your city isn’t listed, consider creating a group in your area!
(IDF Get Connected Groups are part of the IDF Outreach Initiative. The IDF Outreach Initiative is supported by CSL Behring, Grifols, and Takeda.)
4. Join Social Media Groups
As you might guess (especially if you frequent social media outlets), there are numerous ways to connect with other CVID patients through social media.
I have joined the following Facebook groups (and I’m sure even more exist!):
- CVID Zebra Support Group (Common Variable Immune Deficiency)
- CVID: An Official IDF Facebook Group
- Immune Deficiency Support Group
- Coping with CVID
- CVID Symptom Relief
- CVID…A Complementary Approach
- My Life with IG Therapy
- CVID (common variable immunodeficiency)
- Primary Immunodeficiency or CVID Discussion and Support
- Common Variable Immune Deficiency Support Group
- Common Variable Immunodeficiency (Public CVID Group)
- Kansas, Nebraska and Oklahoma Primary Immune Deficiency Group
- CVID Strong; Zebras Unite
- CVID Pet Friends
I also follow other CVID patients, support groups and foundations who are active on instagram and twitter. I found these by searching for:
Several Zebras I have met through social media I chat with frequently and we offer each other mutual support.
5. Create Your Support Team With Organizations Who Want to Support You
Several outstanding organizations exist that offer personalized physical and emotional guidance to those diagnosed with CVID. You can also find the latest information and research through these organizations. Here’s a few that I use on a regular basis:
- Immune Deficiency Foundation
- The Jeffrey Modell Foundation
- IG Living
- NORD-National Organization for Rare Disorders
This is not by any means a comprehensive list of supportive outlets for you, but it’s a starting point.
Finally, here’s a great book I recommend for all CVID Zebras and their family, friends and doctors that focuses on topics like how to build a pyramid of support, coping skills and even helps your support team know what to say and when!
I encourage you, no matter where you are at in your CVID journey to think and stay positive as often as possible. Positive support is exactly why you need to create your CVID support team. I can truly say that creating my own support team is one of the first things I should have done after my CVID diagnosis. There are so many, many people and resources available to you…including me! Feel free to email me anytime with any questions or gripes you might have at firstname.lastname@example.org!
Stay Strong My Zebra Friends!
ABOUT THE AUTHOR
Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.