Communicate Your Needs with Autoimmune Disease
An autoimmune disease doesn’t simply affect the patient; family, friends, your medical care team, and many more are also affected by a diagnosis. As hard as a diagnosis is on us, it can be just as hard on our loved ones. Although they will show strength on our behalf, most of our family and friends do not know how to address these difficult situations. But even once the initial shock of a diagnosis has passed, loved ones can still feel unsure of how to support you in day-to-day life.
Clear communication is very important. Communicating can be difficult especially as we, the patients, try to navigate through the uncertainty of autoimmune disease. Keep in mind that what was once true for you in a previous season, may not be true in this season. Having consistent and open lines of communication can help your loved ones and care-givers provide the care and attention you need, especially during our most difficult times, autoimmune flare-ups.
Below I am providing some tips that have helped me to communicate with my loved ones. These are not skills that I have mastered, but the skills I am consistently working to improve.
1. Be open about your experiences. It is hard for others to know exactly what you are going through without specific examples. I am guilty of saying, “I don’t feel well,” and expecting my husband to understand that my hands are hurting, my head is hurting, I feel exhausted, and loud noises bother me. But when I tell him specifically what is bothering me, he is better able to help me. Afterall, as our caregivers, they want nothing more than to make us feel better when we are down. But we need to be specific.
If you have a hard time getting your words out, I suggest you practice writing down what you would like to say. Write down exactly how you feel without a filter. Then read it outloud.
2. Be clear about your expectations. Yes, it is okay to have expectations and to express them. In fact, it makes things easier, especially because our needs often change completely from season to season. That is perfectly okay. You just need to communicate that.
Think about your lifestyle and daily habits. Are you a morning person or a night owl? Do you have a particular bedtime routine that needs to be respected? Do you have specific dietary needs? These are all things to consider communicating your expectations around your daily needs. Your communication of these expectations will have a direct impact on how you feel, manage stress levels, and prevent flare-ups.
For me, communicating my dietary needs is a priority. During family gatherings or choosing where to go out to eat, my family and friends know that I need options that are both gluten- and dairy-free. Because they know that expectation ahead of time, we are able to find something we can all eat and enjoy without the feelings of awkwardness or potentially triggering a flare-up.
Being clear ahead of time about your expectations when you are having a flare is doubly important so that your caregiver knows exactly what you do or do not like, and there is no guessing game. Think about what you need and prefer when you are having a flare. Are you a person that needs space or extra attention when you are not feeling well?
For example, when I am not feeling well, I prefer a little bit of space. I like for my husband to hang out with me but not be overly affectionate during that time. With clear communication ahead of time, I don’t get frustrated or mad at him, and he doesn’t feel rejected either. We both win!
This is another opportunity to practice writing. Use the same approach, without a filter. If you worry that you will sound demanding or bossy, remember that raw honesty will result in less frustration on both parties in the future. You are confident and sure of what you need. Your caregivers will appreciate and understand your needs and be willing to accommodate you.
3. Be courteous to ask. Even if you’ve been in a relationship for a long time, it never hurts to ask your loved ones how they would like to receive communication. Too often we communicate things in a way that makes sense to us, and only us. Understand that giving and receiving communication are very different. We have our own preferences about how we like to receive and give communication, but our friends and family may have a different preference.
Someone may prefer to receive communication directly with words or they may be completely fine with interpreting non-verbal cues. It’s okay to ask them how they would like to receive communication. For example, is your caregiver completely fine with coming home to a shut bedroom door and understanding that you need time alone? Or would they prefer a heads-up text or phone call to let them know you need pineapple and a dark chocolate bar, stat.
Remember that communication is a two-way street. As much as we need to communicate our needs, so do our caregivers. Be gracious when they need time or space to rest and recharge. Do not take these moments personally; you are not able to pour from an empty cup and neither are they. Communicate with them that it is okay for them to take time for themselves as well. They also need to feel safe and comfortable expressing their own concerns.
4. Be patient. Good communication takes time. It is a learning curve. Be patient with your caregiver and with yourself. I know it can be difficult to see people’s intentions, but more often than not, they are good.
With each new season of life, you are going to need time to learn about yourself. Give yourself time to adjust. Remember to also give that time to your caregivers. Circle back around to your own notes about communication. Ask yourself, “What needs to change during this season?” Keep your lines of communication as open as possible. You will learn how and when you best communicate, but you need to practice.
Your family, your friends, and your medical care team all want what is best for you. If it feels like they are overlooking important details in your life, it is okay to initiate a conversation about what you need during each season. They are not neglecting you. Remember that everyone is fighting their own battle, be patient.
As I wrap up this series on “Preparing for the Changing Season with Autoimmune Disease,” I am already seeing the positive impact these strategies have had on my experience transitioning from summer to fall. This year has presented its own unique challenges, but both I and my caregivers have felt more prepared than ever before to take on the changing temperature and decreasing daylight hours. I am confident that next year I will have even more tips for you.
Until then, I hope that you will consider these tips and create a better experience for yourself during times of change. Please follow me @healing_in_motion, and let me know how you’ve prepared yourself to take on the changing seasons.
