Emotional Impact for Hidradenitis Suppurativa Caregivers
Last updated: January 2023
Caring for someone with hidradenitis suppurativa (HS) can be emotionally draining. Health issues that impact a loved one also impact partners and family members. HS can affect the social, emotional, physical, and financial health of a family. Often, the partner of the person with HS is most deeply burdened.
The nature of HS as a skin condition can cause feelings of embarrassment for the one with HS. This can include feelings of self-consciousness about how the lesions look or smell. The person with HS may avoid social functions, which many times limits their partner’s social outlets as well. A partner may feel guilty for going out if their HS loved one cannot. The result is that both parties’ social circle often shrinks.1
HS is draining on the emotions of both partners. The severity of the disease can affect the relationship. More severe HS cases often have a deeper impact on personal and couple quality of life than milder cases. A partner may worry, feel exhausted, or frustrated with the burden of the disease on the family unit.1
The pain of lesions can also affect sex life, communication, and shared duties. Partners may find themselves carrying a greater load of the household well-being. Cooking, cleaning, errands, and yard work (to name a few) become tasks that fall to partners. Individual and couples therapy are helpful tools for processing feelings and keeping the partnership strong.1
The areas where HS lesions most often occur (underarms and groin) can be hard to reach and treat. A partner often helps with breakout care, applying topical treatments, and changing dressings after surgery. They may also prepare warm compresses for pain management. Attending doctor’s visits to support and advocate for their loved one is another key role for partners. Learning about the disease can help a partner identify breakouts early. They can then encourage their loved one to seek earlier treatment. While caring for a loved one is rewarding, it is also time-consuming. A partner may lack time for their own self-care.1
The chronic pain associated with HS lesions and the difficulty treating it can make working hard. In many cases, HS symptoms interrupt education or career paths, since regular attendance becomes difficult. Many partners feel the financial impact is the most difficult aspect of HS. If a loved one cannot work, the burden of providing falls to the partner without HS. Treatments are often expensive, requiring a higher percentage of a monthly budget. Financial strain is a large source of stress.1
Since HS impacts many different areas of caregivers’ lives, having support is critical. Virtual or in-person support groups for caregivers offer connections with others. Finding a support group can have many benefits. Support groups help affirm the needs of caregivers. Caregivers need breaks and time to connect with others, especially those with shared experiences. Members of a support group help one another through rough times, and they can provide a safe place to cry and fall apart sometimes. The support of other caregivers provides strength and encouragement to keep going on hard days. As a confidential space, support groups allow caregivers to voice frustrations with their loved one.2
Support groups also offer needed social connection and can help prevent caregiver burnout. Taking time out to be with others keeps caregivers mentally and physically healthy. Maintaining the caregiver’s health helps the family unit to remain healthy overall. Learning from others how to manage long-term caregiving is a valuable tool. While the diseases may be different, the impacts on caregiver lives are similar. Support groups give caregivers permission to care for themselves so they can continue to care for a loved one.2
When you need to vent about HS, who do you turn to first?