You will, eventually, have to tell most of your family and friends that you have been diagnosed with Hepatitis C. These may be some of the most awkward, most horribly anticipated conversations you will ever initiate in your life. You will likely find yourself almost paralyzed with the inability to bring the subject up to certain people, and when you do finally work yourself up to it will find that these conversations seldom advance in quite the way you imagined them.
It seems self-evident why you’re in the position of bringing up such a difficult subject: not only will you need their support as you travel through this thing, but you need some referencing of their love right now, some reassurance, some help digesting this intense news. Unfortunately, you are also announcing to them that someone they love has suddenly become vulnerable, and that you may get sick and die, requiring their care or leaving them entirely. This is what they will be hearing. Unexpectedly, you can find yourself in the role of comforting them instead of receiving their support. This happened to me so many times you would think I would have begun to expect it, but each time it shocked me and left me feeling empty and hurt afterward.
These are the learnings I took away from those early weeks, when I first began to tell people I loved what was happening to me:
- You are not required to tell everyone right away. Each conversation sapped some of the small strength I had in reserve, after spending most of my power holding myself together enough to move through my daily life while I grieved my own possible dark future and struggled with the realities of my past. These are oddly exhausting conversations. The initial short list of folks you need to talk to about it might only include your spouse and/or your best friend.
- At the time, I felt it necessary to include my children on that list, because I was afraid they would sense my upheaval and make their own assumptions about what was going on (my daughter was nine and my son was fourteen when I was diagnosed; both were very alert to my emotional climates). I was going to need to get them tested as well, and felt an urgency about finding out if they also had the virus. I realize now that I could have waited a month or two; although I was convinced that I would die any minute, I had plenty of time to find my own center before I had “the conversation” with them. Ditto for my mother. I wanted mommy comfort, and didn’t stop to think how difficult it would be for her to hear that her adult daughter was threatened with illness. I had to expend a lot of energy soothing these three and minimizing my own fears, energy I could have better spent on integrating this new reality.
- People talk to each other. As much as none of us want to be discussed without our presence, the reality is that people gravitate toward one another to share tragedy. If I told my mother, I was telling my Aunt Renee, who was telling my Uncle Steve. I spent a lot of time swearing people to secrecy so that I could be the one in charge of framing the information my way. Even though everyone will commit to secrecy, few can maintain it. They have relationships with each other that don’t necessarily include me, and I have no right to prevent them from seeking understanding through their own dialogue. I had to get over my own discomfort with the idea of “being talked about” and accept that some people who weren’t on my short list were, indeed, on the short lists of people I had needed to share with.
- Get as many facts as you can to work with. If you are going to tell your spouse, be ready to also throw down some statistics about the likelihood of sexual transmission. If you are going to tell your loving grandmother, make sure you have solid survival rate statistics with which to reassure her (nobody wants to freak out grandma). As the weeks progressed, I was able to pass on website information and even books to people who were particularly close to me. Your mother is going to want to look it up on the web. They need to know what you’re (they’re) dealing with. Take some control here so that they go to straightforward websites with real facts on them. There’s a lot of misinformation and overly dire presentations out there – direct them somewhere positive.
- Pick your moments wisely. Crowded restaurants – no. When they are headed out to work – no. On the telephone – not unless they live too far away for a person-to-person talk. Even though you may want this to be a minor bump in the road, to the folks you are telling it is akin to saying, “just wanted to let you know I have terminal colon cancer.” You won’t have the chance to get to the part about how positive the survival statistics are; they will already be crying.
- Conversely, some of the more stalwart amongst your inner circle will not react at all. This is profoundly disconcerting, especially if you’ve spent the last three of these “heavy conversations” passing someone tissues and holding them as they cry. Some people cannot process this in front of you. They will crack open their beer can and turn the conversation to a story about their friend Joe. This feels devastating and rejecting, but remind yourself that we all have different degrees of open presence and that some people deal with their fears absolutely privately. I came to understand that this sort of reaction didn’t mean the person loved me less; it often meant they had so much fear about the possibility of losing me that they couldn’t let themselves crack open. Take a deep breath. They may prove intensely loyal and supportive after a time, or you may lose them entirely. You will not find comfort or strength in everyone.
- If you’re not ready to tell someone, don’t. I had friends - close and loved friends - whom I did not tell for years. I just wanted some people in my life who didn’t know, for whom everything was “as it had been,” and who I wouldn’t worry were perceiving me differently. I also chose not to be open about having HCV at work, and thus was prevented from sharing this information with my work friends (because there are not really many secret-keepers in our world). The only downside to this was that, years later, when I did finally find an opportune moment to share my experience, I felt they were somehow hurt that I hadn’t told them sooner.
- Most of all, remember that one of the major themes of living with Hep C is learning to conserve your strength and use it wisely. You have a right to measure the amount of times you must steel yourself for a conversation that is on a heaviness level equal to coming out as gay or telling someone you are breaking up with them. Having one conversation at that level of depth and intimacy in a week is intense, five is difficult, and ten is marathon level debilitating. You have plenty of time; safeguard your energy.
Right now, the most important person in this story is you. You might need to be held, you need to let yourself feel fear and sadness, and you need someone to give you strength and hope. Your loved ones might not be able to do any of this right away.
You have two options. One is to find a way to ask for what you need as part of your presentation – “I know you’re scared for me, but I’m scared for me too. I need you to just hold me for a second and tell me that everything’s going to be okay.” You know best who of all your people might be able to do this for you.
The second possibility is to allow someone who is not part of your inner circle to take the role of support. After a couple months of telling my friends and family and not really getting what I needed, I went to a therapist who specialized in people dealing with chronic illness. I don’t know that she gave me any specific wisdom about my situation, and she certainly didn’t hold me and tell me it would be okay, but it was really helpful for me to have someone I could talk to whom I didn’t need to reassure. I also paid for a couple of massages, just to get that sensation of being taken care of physically.
Hepatitis C is not a death sentence. You will have to commit yourself to building and protecting your health in a new way, and may need to make some drastic lifestyle changes as you move into living with this disease, but it is attainable. You will need your community to support you, and they, seeing you face this obstacle with courage, will also grow from it. We are all interconnected, and it is the real stuff, the true-life stuff, that binds us and bonds us together.
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