Whether newly diagnosed or several years into a chronic illness diagnosis, it can be challenging to know the best way to communicate with others. It can be hard to know what to say and how to say it. It can feel uncomfortable to ask for help and to find a way to do so so that you don’t feel like a victim. Many people also hesitate to share their diagnosis because of stigma. Others hesitate because they don’t want to be treated differently or have people tiptoe around them, constantly being reminded that they’re “sick.” And of course, let’s not forget that one of the toughest things people face when it comes to sharing is that talking about it often makes it feel more “real” and sometimes we haven’t even accepted it ourselves yet.
First of all, know that all of these feelings, and others I haven’t mentioned, are normal and quite common. I encourage you to first identify what you are feeling around telling your loved ones before you actually do so in order to approach it in a way that feels as safe and as nourishing as possible for you. For example, if you know that one of things you are feeling is that you don’t want to be treated differently once you tell them, then you can frame the conversation from that place and be intentional about expressing that. If, for example, you yourself have not fully accepted that the illness is real, you can express that and ask that they manage their own surprise or emotions about it through their own support system rather than with you since you still need the space to process.
In addition to identifying how you are feeling about it, I find that a few basic steps really help to ease the conversation and how you interact around symptoms moving forward.
If you follow me on social media you’ll know that everything I do begins with intention. I set intentions for my day, for each email, even for this blog. Think about your intention for the conversation. Here are a few examples:
- My intention is to include my loved ones in the life-altering shift I’m experiencing so that I can face this with as much support and ease as possible.
- My intention is to share my experience as authentically as possible, being honest about how I feel while creating space for myself to thrive with loving support.
- My intention is to shed light on my experience in a way that reflects my higher self, the challenges I face, and my belief in a reality where I can face this with ease and resilience and trust my body’s wisdom.
Notice that there is a theme to the intentions I proposed. The ultimate vision is about ease, support, wellness, thriving- not managing disease or illness, changing identity, or anything else similar. Illness is not your identity so stay away from letting anything even similar to that be part of your intention. It can be subtle such as, “helping my family get to know the new me.” Stay away from allowing diagnosis to define you as your cells hear that and respond accordingly with further illness.
So, start by getting clear on why this conversation is important to you and as we’ve addressed in previous blogs, avoid victim consciousness in the process. This is an opportunity for loved ones to support you and to learn what your reality is like so be as honest and as real as possible.
Knowledge is Power – Information is King
It is fair to expect that your loved ones will have lots of questions. To be asked a lot of questions about something that is affecting you and not know answers can be a very scary feeling. It might even make you think things are worse than they are. So come prepared with information. Learn as much as you can about chronic illness and what is happening in your body on a physiological level. You can also reach out to patient support organizations such as the National MS Society for printed material that you can give your family. Organizations like the National MS Society have great pamphlets that describe the diagnosis, treatment options and will include content that will likely answer many of the questions that will come up. There is no need to feel like you should have it all committed to memory. Most importantly, since saying “I don’t know” time after time can sometimes increase anxiety, prepare yourself in advance by reminding yourself that this is new and it’s OK not to know. Not having all the information does not mean that information is scary, it’s simply information you don’t have this minute.
Set the Tone
I recommend you set the tone for the discussion by letting them know the tone you envision in advance. For example, you might not want them to be on their phones while you are sharing so let them know in advance that this time together is important to you and you want to all be fully present without distractions. If you want it to be a hopeful and positive conversation, then let them know that right at the beginning. It can sound something like “I am going to share something really personal with you and it’s important to me that we keep this a positive and hopeful conversation.”
Create Ground Rules
Take some time to think about any ground rules you might have for the conversation. For example, one of my ground rules in this setting is “Do not share other people’s experience with this diagnosis or compare what I’m sharing to something you are experiencing.” Another rule might be “if I decide I don’t want to finish the conversation, I need the space to honor that and pick it up later.”
Set Support Parameters
It’s helpful at this stage to express that you are learning what will be the best way for you to receive support. Asking for help can be really uncomfortable and it might take some time to learn ways to navigate this that minimize the discomfort while getting your needs met. You also want to make sure that the dynamic does not feed victim consciousness or illness identity. I will provide a guideline for asking for and receiving help in a healthy way in a future blog. For now, if there are things you already know are important to you, state them. For example “I don’t want to be constantly asked if I need something, if I need something I’ll speak up.” It might also be the opposite, “I feel really uncomfortable saying I need something, so it would be much easier for me if you could check in regularly.” If there are things you already know that you want in terms of support, share that. Maybe you know you’d like help sorting through all the information out there and everything you’re trying to learn. Maybe it’s important to you to stay active to maintain your current level of health and you’d love one of your loved ones to join you in this. Or maybe you want them to be accepting of you resting more or want to be relied upon less. You will navigate as you go so make this part of the conversation a starting point for future discussions in navigating the support you might need moving forward.
These steps might sound heavy. The conversation does not necessarily have to be heavy. In fact, by taking these steps, it should be a much easier and lighter conversation. I find that when people have this conversation without much preparation or thought, that in fact becomes a much heavier discussion. By setting your intention, being ready with information, and setting the structure that feels right to you, you are setting yourself up for a much healthier and more positive conversation around a life-changing experience. I hope this gives you guidance and and feel free to build upon these steps to make them your own. I have been guiding people through this conversation for nearly two decades now and no two conversations go the same way. You’ll navigate your own path but these basics make all the difference in the world. I’d be happy to hear how this eased your process or what you did to make this conversation easier for you (Email me at firstname.lastname@example.org)!